#reinforcing the theme of oaths not being the ultimate good

[little-cute-pink-horrible-being]

In the end of Wind and Truth Aux/12124 and Sigzil are both rejects, rejected by their bond partner. Sigzil by Vienta for saving her life, but also bringing her a lot of pain. Aux by Szeth for, uh, being a terrible spren. It's something very poetic that they end up traveling and trying to figure their new lives out together.

Also, why does Sig have Windrunner plate in Sunlit man? It mentions plate of two orders forming around him, but he didn't swear the fourth Windrunner ideal...

[warsofasoiaf]

Writing Characters With Believable Military PTSD

I typically write these writing and worldbuilding essays from a dispassionate perspective, offering advice and context to prospective writers from as neutral a point of view as I can manage, with the goal being to present specific pieces of information and broader concepts that can hopefully improve writing and build creators’ confidence to bring their projects to fruition, whether that be writing, tabletop gaming, video game programming, or anything that suits their fancy. While writing this essay though, I struggled to maintain that perspective. Certainly, the importance of the topic to me was a factor, but ultimately, I saw impersonality just as a suboptimal presentation method for something so intensely personal. I do maintain some impartiality particularly in places where historical or academic context is called for, but in other respects I’ve opted for a different approach. Ultimately, this essay is a labor of love for me, love for those who suffer from military PTSD, love for those who love those who suffer from it, and love for writers who want to, in the way that they so choose, help those two other groups out. Thus, this is a different type of essay in certain segments than my usual fare; I hope the essay isn’t an unreadable chimera because of it.

This essay focuses on military-related PTSD. While there are some concepts that translate well into PTSD in the civilian sphere, there are unique elements that do not necessarily fit the mold in both directions, so for someone hoping to write a different form of PTSD, I would recommend finding other resources that could better suit your purposes. I also recommend using more than one source just in general, trauma is personal and so multiple sources can help provide a wide range of experiences to draw upon, which should hopefully improve any creative work.

And as a final introductory note, traumatic experiences are deeply personal. If you are using someone you know as a model for your writing, you owe it to that person to communicate exactly what you are doing and to ask their permission every step of the way. I consider it a request out of politeness to implore any author who uses someone else’s experiences to inform their writing in any capacity, but when it comes to the truly negative experiences in someone’s life, this rises higher from request to demand. You will ask someone before taking a negative experience from their own life and placing it into your creative works, and you will not hide anything about it from them. Receiving it is a great sign of trust. The opposite is a travesty, robbing someone of a piece of themselves and placing it upon display as a grotesque exhibit. And if that sounds ghoulish and macabre, it’s because it is, without hyperbole. Don’t do it.

Why Write PTSD?

What is the purpose of including PTSD in a creative work? There have been plenty of art therapy actions taken by those who suffer PTSD to create something from their condition, which can be as profound for those who do not have it as it is therapeutic for those that do, but why would someone include it in their creative works, and why is some no-name guy on the internet writing an essay offering tips as to how to do it better?

Certainly, one key element is that it’s real, and it happens. If art is to reflect upon reality, PTSD suffered by soldiers is one element of that, so art can reflect it, but what specifically about PTSD, as opposed to any other facet of existence? Author preference certainly plays a factor, but why would someone try to include something that is difficult to understand and difficult to portray? While everyone comes to their own reason, I think that a significant number of people are curious about what exactly goes on in the minds of someone suffering through PTSD, and creative works allow them a way to explore it, much the way fiction can explore scenarios and emotions that are either unlikely or unsafe to explore in reality. If that’s the case, then the purpose of this essay is rather simple, to make the PTSD examination more grounded in reality and thus a better reflection of it. But experiences are unique even if discernable patterns emerge, so in that sense, no essay created by an amateur writer with no psychological experience could be an authoritative take on reality, the nature of which would is far beyond the scope of this essay.

For my own part, I think that well-done creative works involving PTSD is meant to break down the isolation that it can cause in its wake. Veterans suffering may feel that they are alone, that their loved ones cannot understand them and the burden of trying to create that would simply push them away; better instead to have the imperfect bonds that they currently have than risk losing them entirely. For those who are on the outside looking in, isolation lurks there as well, a gulf that seems impossible to breach and possibly intrusive to even try. Creative works that depict PTSD can help create a sense that victims aren’t alone, that there are people that understand and can help without demeaning the sense of self-worth. Of course, another element would be to reduce the amount of poorly-done depictions of PTSD. Some creative works use PTSD as a backstory element, relegating a defining and important element of an individual’s life as an aside, or a minor problem that can be resolved with a good hug and a cry or a few nights with the right person. If a well-done creative work can help create a bridge and break down isolation, a poorly-done one can turn victims off, reinforcing the idea that no one understands and worse, no one cares. For others, it gives a completely altered sense of what PTSD is and what they could do to help, keeping them out, confusing them, or other counter-productive actions. In that sense, all the essay is to help build up those who are doing the heavy lifting. I’m not full of so much hubris as to think this is a profound piece of writing that will help others, but if creators are willing to try and do the hard work of building a bridge, I could at least try to help out and provide a wheelbarrow.

An Abbreviated Look At The Many Faces and Names of PTSD Throughout History

PTSD has been observed repeatedly throughout human history, even when it was poorly understood. This means that explorations of PTSD can be written in settings even if they did not have a distinctly modern understanding of neurology, trauma, or related matters. These historical contexts are also useful for worldbuilding a believable response in fictional settings and scenarios that don’t necessarily have a strict analogue in our own history. By providing this historical context, hopefully I can craft a broad-based sense of believable responses to characters with PTSD at a larger level.

In the time of Rome, it was understood by legionnaires that combat was a difficult endeavor, and so troops were typically on the front lines engaged in combat for short periods of time, to be rotated back for rest while others took their place. It was considered ideal, in these situations, to rotate troops that fought together back so that they could rest together. The immediate lesson is obvious, the Romans believed that it was vital for troops to take time to process what they had done and that was best served with quiet periods of rest not just to allow the adrenaline to dissipate (the "combat high"), but a chance for the mind to wrap itself around what the legionnaire had done. The Romans also recognized that camaraderie between fellow soldiers helped soldiers to cope, and this would be a running theme throughout history (and remains as such today). Soldiers were able to empathize with each other, and help each other through times of difficulty. This was not all sanguine, however, Roman legions depended on their strong formations, and a soldier that did not perform their duty could endanger the unit, and so shame in not fulfilling their duty was another means to keep soldiers in line. The idea of not letting down your fellow soldiers is a persistent refrain in coping with the traumas of war, and throughout history this idea has been used for both pleasant and unpleasant means of keeping soldiers in the fight.

In the Middle Ages, Geoffroi de Charny wrote extensively on the difficulties that knights could experience on the campaign trail in his Book of Chivalry. The book highlights the deprivation that knights suffered, from the bad food and poor sleep to the traumatic experience of combat to being away from family and friends to the loss of valued comrades to combat and infection; each of these is understood as a significant stressor that puts great strain on the mental health of soldiers up to today. De Charny recommended focusing on the knightly oaths of service, the needs of the mission of their liege, and the duty of the knight to serve as methods to help bolster the resolve of struggling knights. The book also mentions seeking counseling and guidance from priests or other confidants to help improve their mental health to see their mission through. This wasn’t universal, however. Some severely traumatized individuals were seen as simple cowards, and punished harshly for their perceived cowardice as antithetical to good virtue and to serve as an example.

World War I saw a sharp rise in the reported incidents of military-related PTSD and new understandings and misunderstandings. The rise in the number of soldiers caused a rise in cases of military PTSD, even though the term itself was not known at the time. Especially in the early phases of the war, many soldiers suffering from PTSD were thought to be malingering, pretending to have symptoms to avoid being sent to the front lines. The term “shell shock” was derived because it was believed that the concussive force of artillery bombardment caused brain damage as it rattled the skull or carbon monoxide fumes would damage the brain as they were inhaled, as a means to explain why soldiers could have physical responses such as slurred speech, lack of response to external stimuli, even nigh-on waking catatonia, despite not being hit by rifle rounds or shrapnel. This would later be replaced by the term “battle fatigue” when it became apparent that artillery bombardment was not a predicative indicator. Particularly as manpower shortages became more prevalent, PTSD-sufferers could be sent to firing squads as a means to cow other troops to not abandon their post. Other less fatal methods of shaming could occur, such as the designation “Lack of Moral Fibre,” an official brand of cowardice, as an attempt to shame the members into remembering their duty. As the war developed, and understanding grew, better methods of treatment were made, with rest and comfort provided to slight cases, strict troop rotations observed to rotate men to and from the front lines, and patients not being told that they were being evacuated for nervous breakdown to avoid cementing that idea in their mind. These lessons would continue into World War II, where the term “combat stress reaction” was adopted. While not always strenuously followed, regular rotations were adopted as standard policy. This was still not universal, plenty of units still relied upon bullying members into maintaining their post despite mental trauma.

The American military promotes a culture of competence and ability, particularly for the enlisted ranks, and that lends itself to the soldier viewing themselves in a starkly different fashion than a civilian. Often, a soldier sees the inability to cope with a traumatic experience as a personal failure stemming from the lack of mental fortitude. Owning up to such a lack of capability is tantamount to accepting that they are an inferior soldier, less capable than their fellows. This idea is commonly discussed, and should not be ignored, but it is far from the only reason. The military also possesses a strong culture of fraternity that obligates “Don’t be a fuckup,” is a powerful motivating force, and it leads plenty of members of the military to ignore traumatic experiences out of the perceived need not to put the burden on their squadmates. While most professional militaries stress that seeking mental health for trauma is not considered a sign of weakness, enlisted know that if they receive mental health counseling, it is entirely likely that someone will have to take their place in the meantime. That could potentially mean that another person, particularly in front-line units, are exposed to danger that they would otherwise not be exposed to, potentially exacerbating guilt if said person gets hurt or killed. This is even true in stateside units, plenty of soldiers don’t report for treatment because it would mean dumping work on their fellows, a negative aspect of unit fraternity. Plenty of veterans also simply never are screened for mental health treatment, and usually this lends to a mentality of “well, no one is asking, so I should be fine.” These taken together combine to a heartbreaking reality, oftentimes a modern veteran that seeks help for mental trauma has often coped silently for years, perhaps self-medicating with alcohol or off-label drug usage, and is typically very far along their own path comparatively. Others simply fall through the cracks, not being screened for mental disorders and so do not believe that anything is wrong; after all, if something was wrong, surely the doctors would notice it, right? The current schedule of deployments, which are duration-based and not mission-based, also make it hard for servicemembers to rationalize their experiences and equate them to the mission; there’s no sense of pairing suffering to objectives the way that de Charnay mentioned could help contextualize the deprivation and loss. These sorts of experiences make the soldier feel adrift, and their suffering pointless, which is discouraging on another level. It is one thing to suffer for a cause, it’s another not to know why, amplifying the feelings of powerlessness and furthering the isolation that they feel.

Pen to Page - The Characters and Their Responses

The presentation of PTSD within a character will depend largely on the point-of-view that the author creates. A character that suffers from PTSD depending on the presence of an internal or external point-of-view, will be vastly different experiences on page. Knowing this is essential, as this will determine how the story itself is presenting the disorder. Neither is necessarily more preferable than the other, and is largely a matter of the type of story being told and the personal preference of the author.

Internal perspectives will follow the character’s response from triggering event to immediate response. This allows the author to present a glimpse into what the character is experiencing. In these circumstances, remember that traumatic flashbacks are merely one of many experiences that an average sufferer of PTSD can endure. In a visual medium, flashbacks are time-effective methods to portray a character reliving portions of a traumatic experience, but other forms of media can have other tools. Traumatic flashbacks are not necessarily a direct reliving of an event from start to finish, individuals may instead feel sudden sharp pains of old injuries, be overwhelmed by still images of traumatic scenes or loud traumatic sounds. These can be linked to triggers that bring up the traumatic incident, such as a similar sight, sound, or smell. These moments of linkage are not necessarily experienced linearly or provide a clear sequence of events from start to finish (memory rarely is unless specifically prompted), and it may be to the author’s advantage to not portray them as such in order to communicate the difficulty in mental parsing that the character may be experiencing. Others might be more intrusive, such as violently deranged nightmares that prevent sleep. The author must try to strike a balance between portraying the experience realistically and portraying it logically that audience members can understand. The important thing about these memories is that they are intrusive, unwelcome, and quite stressful, so using techniques that jar the reader, such as the sudden intrusive image of a torn body, a burning vehicle, or another piece of the traumatic incident helps communicate the disorientation. Don't rely simply on shock therapy, it's not enough just to put viscera on the page. Once it is there, the next steps, how the character reacts, is crucial to a believable response.

When the character experiences something that triggers their PTSD, start to describe the stress response, begin rapidly shortening the sentences to simulate the synaptic activity, express the fight-flight-freeze response as the character reacts, using the tools of dramatic action to heighten tension and portraying the experience as something frightful and distinctly undesirable. The triggering incident brings back the fear, such as a pile of rubble on the side of the road being a potential IED location, or a loud firework recalling the initial moments of an enemy ambush. The trauma intrudes, and the character falls deep into the stress response, and now they react. How does this character react? By taking cover? By attacking the aggressor who so reminds them of the face of their enemy? Once the initial event starts, then the character continues to respond. Do they try to get to safety? Secure the area and eliminate the enemy? Eventually, the character likely recognizes their response is inappropriate. It wasn’t a gunshot, it was a car backfiring, the smell of copper isn’t the sight of a blown-apart comrade and the rank odor of blood, it’s just a jug of musty pennies. This fear will lead to control mechanisms where the victim realizes that their response is irrational. Frequently, the fear is still there, and it still struggles with control. This could heighten a feeling a powerlessness in the character as they try and fail to put the fear under control: "Yes, I know this isn’t real and there’s nothing to be afraid of, but I’m still shaking and I am still afraid!" It’s a horrifying logical track, a fear that the victim isn’t even in control of their thoughts - the one place that they should have control - and that they might always be this way. There’s no safety since even their thoughts aren’t safe. Despair might also follow, as the victim frantically asserts to regain control. Usually with time, the fear starts to lessen as the logical centers of the brain regain control, and the fear diminishes. Some times, the victim can't even really recall the exact crippling sense of fear when attempting to recall it, only that they were afraid and that it was deeply scary and awful, but the notion that it happened remains in their mind.

Control mechanisms are also important to developing a believable PTSD victim. Most sufferers dread the PTSD response and so actively avoid objects or situations that could potentially trigger. Someone who may have had to escape from a helicopter falling into the ocean may not like to be immersed in water. Someone who was hit by a hidden IED may swerve to avoid suspicious piles in the road. Someone buried under a collapsing ceiling may become claustrophobic. Thus, many characters with PTSD will be hypervigilant almost to the point of exhaustion, avoiding setting off the undesired response. This hypervigilance is mentally taxing; the character begins to become sluggish mentally as all their energy is squeezed out, leaving them struggling for even the simplest of rational thoughts. This mental fog can be translated onto the page in dramatic effect by adding paragraph length to even simple actions, bringing the reader along into the fog, laboriously seeing the character move to perform simple actions. Then, mix in a loss of a sense of purpose. They’re adrift, not exactly sure what they’re doing and barely aware of what’s happening, although they are thinking and functioning. In the character’s daily life, they are living their life using maximum effort to avoid triggering responses; this is another aspect of control that the character can use as an attempt to claw back some semblance of power in their own lives. Even control methods that aren’t necessarily healthy such as drinking themselves to pass out every night or abusing sleeping pills in an attempt to sleep due to their nightmares, are ways to attempt to regain a sense of normalcy and function. Don’t condescend to these characters and make them pathetic, that’s just another layer of cruelty, but showing the unhealthy coping mechanisms can demonstrate the difficulty that PTSD victims are feeling. Combined with an external perspective, the author can show the damage that these unhealthy actions are doing without casting the character as weak for not taking a different path.

External perspectives focus on the other characters and how they observe and react to the individual in question. Since the internal thought process of the character is not known, sudden reactions to an unknown trigger can be quite jarring for characters unaware, which can mirror real-life experiences that individuals can have with PTSD-sufferers. In these types of stories, the character’s reaction to the victim is paramount. PTSD in real life often evokes feelings of helplessness in loved ones when they simply cannot act to help, can evoke confusion, or anger and resentment. These reactions are powerful emotions with the ability to drive character work, and so external perspectives can be useful for telling a story about what it is like for loved ones who suffer in their own fashion. External perspectives can be used not just in describing triggering episodes, but in exploring how the character established coping mechanisms and how their loved ones react to them. Some mechanisms are distinctly unhealthy, such as alcohol or prescription drug abuse, complete withdrawal, or a refusal to drive vehicles, and these create stress and a feeling of helplessness in characters or can impel them to try and take action. Others can be healthy, and a moment of inspiration and joy for an external perspective could be sharing in that mechanism, demonstrating empathy and understanding which evokes strong pathos, and hopefully to friends of those who suffer from PTSD, a feeling that they too, are not alone.

As the character progresses, successes and failures can often be one of the most realistic and most important things to include within the work, since those consumers who have PTSD will see parts of themselves in the characters, which can build empathy and cut down on the feelings of isolation that many victims of PTSD feel. A character could, over the course of the story, begin weaning themselves off of their control mechanisms, have the feelings of panic subside as their logical sides more quickly assert control, replace unhealthy coping mechanisms with healthier ones, or other elements of character progression and growth. Contrarily, a character making progress could, after experiencing significant but unrelated stressors, backslide either into unhealthy coping mechanisms or be blindsided by another attack. This is a powerful fear for the victim, since it can cause them to think ‘all my progress, all my effort, and I am not free!’ This is often a great fear for PTSD users (people with depression often have the same feeling) that find methods of coping are no longer as effective, and the struggle is perceived as one that they’re ultimately doomed to failure. This feeling of inevitable failure can lead to self-harm and suicide as their avenue of success seems to burn to ash right as it was in their hands. More than one soldier suffering from PTSD has ended up concluding: “Fuck it, I can’t live like this,” as horrible as that is. Don’t be afraid to include setbacks and backsliding, those happen in reality, and can be one of the most isolating fears in their lives; if the goal of portraying PTSD accurately is to help remove that feeling of isolation, then content creators must not avoid these experiences. Success as well as failure are essential to PTSD in characters in stories, these elements moreso than any other, I believe, will transcend the medium and form a connection, fulfilling the objective we set out to include in the beginning paragraphs.

Coming Back to the Beginning

It might be counterintuitive at first glance to say “including military PTSD will probably mean it will be a long journey full of discouraging story beats that might make readers depressed,” because that’s definitely going to discourage some readers to do that. I don’t see it that way, though. The people that want to do it should go in knowing it’s going to be hard, and let that strengthen their resolve, and put the best creation they can forward. The opposite is also true. Not every prospective author has to want to include any number of difficult subjects in their works, and that’s perfectly fine. Content creators must be free to shape the craft that they so desire without the need to be obligated to tackle every difficult issue, and so no content creator should be thought of as lesser or inferior because they opt not to include it in their works. I think that’s honestly stronger than handling an important topic poorly, or even worse, frivolously. Neither should anyone think that a content creator not including PTSD in their works means that they don’t care about those who suffer from it or for those who care about them or who simply don’t care about the subject in general. That’s just a terrible way to treat someone, and in the end, this entire excursion was about the opposite

Ultimately, this essay is a chance not only to help improve creative works involving PTSD, but to reflect on the creative process. Those who still want to proceed, by all means, do so. Hopefully this essay will help you create something that can reach someone. If every piece of work that helps portray PTSD can reach someone somewhere and make things easier, even if ever so little, well then, that’s what it’s really all about.

Hoping everyone has a peaceful Memorial Day. Be good to each to other.

SLAL

[red-winters]

*Note: I’m basically writing this down as it occurs to me, trying to crystallize and put into words why I, personally, found the sequels...lacking.

You really don’t have to agree, and I might even change my mind with the introduction of alternate viewpoints and other good arguments, but for now, this is what I have.

Opinions on the Skywalker Legacy, Rey, and Reylo

Something I just realized about Star Wars and TRoS:

Hope for a better future is important and is a recurring theme in the Star Wars Universe.

The prequels were fascinating and tragic because it covered the Fall of the Republic and its protagonist/hero-figure. We invested a lot in the characters despite knowing how everything would end because we knew, ultimately, there would be a “happy ending” with their children in the Original Trilogy. RotS was heartbreaking because of Anakin’s fall, Padme’s death, the end of an age, and Obi-Wan’s exile, BUT it didn’t feel completely hollow because we got to see a new hope (Anakin’s children) enter the galaxy.

The sequels... took that happy ending away and cemented the Skywalker legacy as being one of loss—specifically, the breaking of a family. Anakin’s life was a tragedy for many reasons, but the recurring theme there was the loss of family to death or estrangement or both. He was locked into a life of loss until the end when he was finally able to break free of the cycle by saving Luke and redeeming himself, thereby reconciling him with his son, his family, the boy Shmi Skywalker raised, and Obi-Wan.

Luke and Leia initially differed from him because they gained and kept what Anakin never could seem to hold. They were supposed to be the start of something better, something new. What made the original trio work was that “found family” dynamic that seems so important to a successful Star Wars story’s narrative DNA. That should’ve been the end of a cycle, but the sequels broke that for everybody. Maybe it was necessary in order to set the stage for the newest Star Wars installment, but still.

When we meet our OT heroes again, Han and Leia are estranged and Luke has lost his hope, lives alone, and is deliberately shunning the family he’d built. Leia and Han are marginally better because they do eventually gravitate and return to each other, but even that is dishearteningly temporary. That sense of distance and estrangement pulls all of them down and never fully goes away.

It gets slightly better when Rey enters the picture, but ultimately, even her arc just reinforces the Skywalker legacy of loss—from two sides even, if we count Rey as a “spiritual” Skywalker with Ben filling in the literal Skywalker legacy category. The writers put a lot of work into developing her relationship with Kylo/Ben and had the chance to break the cycle—once and for all⁠—with these two and surpass the previous generations, but they didn’t.

Was it to “shock” the audience? Was it because the writers believed two characters living “happily ever after” was considered unrealistic? I don’t know, but the more I think about the ending, the more convinced I am that a happy ending...would’ve been the most surprising and fitting path they could’ve taken.

Let’s consider it for a moment: Star Wars is about hope, about being better than the previous generations, repeating themes, and breaking cycles—for the better. Star Wars is about family, found family, and redemption.

Where Anakin lost Shmi, eventually lost Obi-Wan, and had a false “father figure” in Palpatine, Rey could’ve had Han, Luke, and Leia (in a greater, more supportive capacity than in canon—even if only in spirit).

Where Anakin lost Padme due to his own fear, Rey saved Ben due to their faith, trust, and compassion in/for each other—which is why Ben’s death feels like such a great loss to me.

Where Anakin and Obi-Wan lost their brotherhood and Luke and Leia were separated by time, trauma, and guilt, Rey and Finn could’ve developed an even stronger bond, complementing and supporting each other from different viewpoints. They could’ve come into their own identities as a new, better type of Jedi and as an architect of true change in the galaxy as the Storm-trooper who decided he couldn’t live with taking innocent lives, defected, and started a revolution. The writers could’ve developed and explored deeper familial—perhaps as metaphorical twins?—bonds between them, and their similarities as orphan “nobodies” who grew up without their families.

Where Anakin lost his way for decades, existing in a state of being emotionally and spiritually “dead,” Ben and Rey could’ve found and lived theirs. Where absence defined Anakin and Padme as parents, Ben and Rey could’ve broken that mold.

Where Anakin’s Jedi path starved him of his bonds and allowed insecurity and obsession to fester, Ben and Rey could’ve walked a new path and created a new type of Jedi—or something else altogether—not defined by an unhealthy fear of attachment, living in harmony with their emotions, and capable of love without being ruled by fear.

Where Anakin and the Old Jedi Order’s (unintended, perhaps) effect on the Skywalker Family Legacy was loss, isolation, and estrangement from family, Ben and Rey could’ve redefined that legacy into one of unity, support, and togetherness. Where family and attachment was excluded from Anakin’s understanding of the old Jedi, Ben and Rey’s “found family” approach could’ve built up and strengthened the new Jedi. Where Anakin started and lived his Jedi path by losing his mother and his family, Ben and Rey started (in the case of Ben, re-started ) theirs by finding their family.

Where Anakin, Luke, and Leia’s paths lead them to living lonely lives, Ben and Rey could’ve found a path, still following the Force, based in unity and teamwork.

Where Anakin and Padme lost their children, lost their lives, and their chosen paths/vocations (to death or forswearing their oaths), Rey and Ben could’ve found theirs together, creating a stable foundation for a better version of the new Jedi than Luke or the previous generation were capable of building.

Instead of all that... what we have in TRoS is a Rey that is alone (again), naming herself a Skywalker, and adopting a broken legacy she and Ben could’ve—should have, maybe—already fundamentally redefined. We get a warped image of a Rey who could’ve been the beginning of a new era...but is, in reality, the final nail in the Skywalker family coffin.

[realselfblog]

Patients, Health Consumers, People, Citizens: Who Are We In America?

“Patients as Consumers” is the theme of the Health Affairs issue for March 2019. Research published in this trustworthy health policy publication covers a wide range of perspectives, including the promise of patients’ engagement with data to drive health outcomes, citizen science and participatory research where patients crowdsource cures, the results of financial incentives in value-based plans to drive health care “shopping” and decision making, and ultimately, whether the concept of patients-as-consumers is useful or even appropriate.

Health care consumerism is a central focus in my work, and so it’s no surprise that I’ve consumed every bit of this publication. [In full disclosure, last year when this issue was being curated, I was part of a team that proposed to submit an article for the publication, but our submission was not accepted].

I will weave findings from four of the papers in this post, for purposes of getting to the question I ask in the title above: what is the right noun to use for U.S. patients in 2019 — patients, consumers, people, health citizens?

The paper that asserts “no” to the question comes from Michael Gusmano, Karen Maschke, and Mildred Solomon, all associated with the Hastings Center which does research into bioethics. The authors note that “consumer-driven” health care is, “associated with neoliberal efforts to emphasize market factors in health reform,” de-emphasizing government regulation and financing. This concept can be potentially harmful, they believe, assuming that health care is a traditional market. “A consumer metaphor places disproportionate burdens on patients to reduce health care costs,” they posit, placing the burden of cost containment on patients. While price transparency is a sound concept, it’s not a panacea, the authors contend. “Patient-centered” approaches are constructive because they bring patients’ values into clinical care. Asking consumers to shop for services and be “prudent purchasers” of services? That’s too great a burden to put on patients, which could pressure clinicians to make unsound treatment decisions.

Now consider what happens when consumers (the noun chosen by the authors of the second paper I’m adding to the mix) access data, information and tools for self-management in health care. Karandeep Singh of the University of Michigan (GO BLUE! my alma mater) and colleagues track the growth of consumer-facing digital health tools and initiatives leading to consumers’ engagement with websites and apps. The article plots a brief history of the HITECH Act which fostered EHR adoption among clinicians and hospitals, the Blue Button program at the Veterans Health Administration enabling patients’ access to health data, OpenNotes, patient-generated data through wearable tech and smartphone apps, and consumer-grade medical devices like the AliveCor ECG and KardiaBand accessory for the Apple Watch. Singh et. al. point to limitations of consumers’ universal embrace and sustained use of these digital health tools, including low adoption of patient portals (especially among younger people, members of minority groups, healthy people, and those with less education), patient-generated data lack of interoperability with electronic health records, search engine over-dependence (that is, when “paging Dr. Google” yields sub-optimal results for the patient to act on), and lack of transparent and useful, high-quality data online. The authors call for improved regulation from the Federal Trade Commission (FTC), the U.S. agency responsible for monitoring claims and the use of personal data out-of-health-context.

Article #3 in my deep dive here extends the second analysis into digital health information, next focusing on Americans’ use of quality information on doctors. Mark Schlesinger of Yale partnered with seven other researchers from RAND and other organizations to explain the history of clinician quality information (“report cards,” patient experience surveys and clinical quality metrics, among the different types of information available to consumers) and results of surveys assessing the impact of this information on a consumer’s choice of physician. The research found that peoples’ exposure to clinician quality information doubled between 2010 and 2015, and more consumers sought quality metrics — albeit, with differences across sub-groups of people (e.g., racial and ethnic minority consumers were better informed that whites over time, and people with more education also saw more of the quality information). The good news: that Americans have become more aware of information comparing clinician quality, and more often seek that information than they have in the past — especially other patients’ comments about doctors. The authors warn, though, that consumers may tend to over-trust and -use that patient-reported information more than some of the objective clinician quality and safety metrics. Furthermore, the difference in information seeking between more educated Americans versus less could exacerbate health disparities and the inequities of health literacy.

Finally, to the fourth paper, looking at the roles of assisters and automated decision support tools in consumers’ health insurance marketplace choices. This study assessed consumers’ search for health insurance marketplace plans extended through the Affordable Care Act, analyzing the experience of 32 “assisters,” trained professionals who help consumers navigate their choice of plans. These people included the official “navigators” conceived and funded by the ACA, certified application counselors, and other people who help consumers identify health insurance plans on the marketplaces. For context, the authors note that over 5,000 marketplace assister programs provided outreach and enrollment to consumers in the third open enrollment period 2015-16. Additional context here is that President Trump cut funding for navigators in federally facilitated marketplaces by over 80%, documented here in a report from the Kaiser Family Foundation. The bottom line of this fourth paper is that consumers need support to understand their health plan choices, but resourcing that support is costly and politically controversial in the current political environment.

Taken together, these four papers from Health Affairs lead to the following themes:

By 2019, patients in the U.S. have been compelled, by both the structure of the ACA marketplaces and the evolving consumer-directed health plan designs adopted by commercial plans and employers. to take on aspects of consumer behavior relative to personal health care choices — related to both health insurance and financing, along with clinician decisions.

Not all patients are willing to or in the moment able to exercise these consumer muscles, whether due to health literacy and education differences, access to digital health tools (including broadband connectivity), or simply lower willingness to engage.

Even when willing and fully armed with digital health tools and information access, being a “health care consumer” can lead people to make sub-optimal decisions for themselves, and potentially find their clinicians in compromised roles when making therapeutic treatment choices.

As Alan Weil summarized in the March 2019 Health Affairs Editor-in-Chief introduction, there are “ups and downs of expecting patients to act as consumers.”

Health Populi’s Hot Points: We can find discussions about health care consumerism in every major health care journal, and the popular press, as well. Just two weeks ago, I read the cover story, “It’s still the prices, stupid,” shown here from the cover of Modern Healthcare dated 25 February 2019.

In the article to which this assertion ties, Harris Meyer talks about the growing push for price regulation in the U.S. — most visibly for prescription drugs, and increasingly for other line items in the medical bill like nursing home care, hospital care, and physician services.

Sixteen pages after the start of the price regulation article in Modern Healthcare, you’ll find another story on hospitals looking for ways to address social needs: housing, transportation, and healthy food access among them. I’ve argued that, instead of allocating over 18% of U.S. GDP to medical care spending, America should reallocate some of these dollars to SDoH. Just today, the New York Times featured an in-depth article on the poor air quality in Pittsburgh, one of the key influences on human health that can be at least as bad for a population as smoking a pack of cigarettes a day — with subsequent negative health and financial impacts on the individual and community.

While our health care trade press re-iterates Uwe Reinhardt’s and Gerard Anderson’s observation that, “It’s the prices, stupid” from back in 2003, closer to peoples’ homes and real lives, Consumer Reports and TIME magazine also try and support Americans’ health consumer muscle/brain) development and ethos.

Here in my curated selection of CR covers, you’ll find research into prescription drug prices, pain pills, over-treatment, picking the right doctor, and protecting one’s privacy.

Many of us who chat via Twitter and LinkedIn, and in health care conferences throughout the year, have wrestled with what we should “call” patients — whether consumers, people, citizens. This is not a new-new question, I assure you. Been there. Asked that.

As my thinking continues to evolve, I will share some of the most recent segment my learning journey. I became a citizen of Italy, and thus the European Union (EU), last year, retaining my U.S. citizenship. When I proudly and humbly took my oath at the Italian Consulate in Philadelphia, I immediately became a health citizen of the EU, along with being covered by the privacy protections of the GDPR. This was one of those lifetime lightbulb moments for me both personally and professionally.

It led me to reinforce my belief in the concept of health citizenship for my fellow and sister Americans. I’ll be sharing more about that with you in my upcoming book on health care consumerism and beyond….so stay tuned for that plotline. For now, please read the entire March 2019 issue of Health Affairs to challenge and inform your own appreciation for and understanding of the patient-vs-consumer debate. Words do matter.

The post Patients, Health Consumers, People, Citizens: Who Are We In America? appeared first on HealthPopuli.com.

Patients, Health Consumers, People, Citizens: Who Are We In America? posted first on http://dentistfortworth.blogspot.com

[maxihealth]

Patients, Health Consumers, People, Citizens: Who Are We In America?

“Patients as Consumers” is the theme of the Health Affairs issue for March 2019. Research published in this trustworthy health policy publication covers a wide range of perspectives, including the promise of patients’ engagement with data to drive health outcomes, citizen science and participatory research where patients crowdsource cures, the results of financial incentives in value-based plans to drive health care “shopping” and decision making, and ultimately, whether the concept of patients-as-consumers is useful or even appropriate.

Health care consumerism is a central focus in my work, and so it’s no surprise that I’ve consumed every bit of this publication. [In full disclosure, last year when this issue was being curated, I was part of a team that proposed to submit an article for the publication, but our submission was not accepted].

I will weave findings from four of the papers in this post, for purposes of getting to the question I ask in the title above: what is the right noun to use for U.S. patients in 2019 — patients, consumers, people, health citizens?

The paper that asserts “no” to the question comes from Michael Gusmano, Karen Maschke, and Mildred Solomon, all associated with the Hastings Center which does research into bioethics. The authors note that “consumer-driven” health care is, “associated with neoliberal efforts to emphasize market factors in health reform,” de-emphasizing goernment regulation and financing. This concept can be potentiallyu harmful, they believe, assuming that health are is a traditional market. “A consumer metaphor places disproportionate burdesn on patients to reduce health care costs,” they posit, placing the burden of cost containment on patients. While price transparency is a sound concept, it’s not a panacea, the authors contend. “Patient-centered” approaches are constructive because they bring patients’ values into clinical care. Asking consumers to shop for services and be “prudent purchasers” of services? That’s too great a burden to put on patients, which could pressure clinicians to make unsound treatment decisions.

Now consider what happens when consumers (the noun chosen by the authors of the second paper I’m adding to the mix) access data, information and tools for self-management in health care. Karandeep Singh of the University of Michigan (GO BLUE! my alma mater) and colleagues track the growth of consumer-facing digital health tools, and initiatives leading to consumers’ engagement with websites and apps. The article plots a brief history of the HITECH Act which fostered EHR adoption among clinicians and hospitals, the Blue Button program at the Veterans Health Administration enabling patients’ access to health data, OpenNotes, patient-generated data through wearable tech and smartphone apps, and consumer-grade medical devices like the AliveCor ECG and KardiaBand accessory for the Apple watch. Singh et. al. point to limitations of consumers’ universal embrace and sustained use of these digital health tools, including low adoption of patient portals (especially among younger people, members of minority groups, healthy people, and those with less education), patient-generated data’s lack of interoperability with electronic health records, search engine dependence (that is, when “paging Dr. Google” yields sub-optimal results for the patient to act on), and lack of transparency and useful, high-quality data online. The authors call for improved regulation from the Federal Trade Commission (FTC) which is the U.S. agency responsible for monitoring claims and the use of personal data out-of-context.

Article #3 in my deep dive here extends the second analysis into digital health information, focusing on Americans’ use of quality information describing doctors. Mark Schlesinger of Yale partnered with seven other researchers from RAND and other organizations to explain the history of clinician quality information (“report cards,” patient experience surveys and clinical quality metrics, among the different types of information available to consumers) and results of surveys assessing the impact of this information on consumers’ choices of physicians. The research found that peoples’ exposure to clinician quality information doubled between 2010 and 2015, and more consumers did seek quality metrics with differences across sub-groups of people (e.g., recial and ethnic minority consumers were better informed that whites over time, and people with more education also saw more of the quality information). The good news: that Americans have become more aware of information comparing clinician quality, and more often seek that information than they have in the past — especially other patients’ comments about doctors. The authors warn, though, that consumers may tend to trust that patient-reported information more than some of hte more objective clinician quality and safety metrics. Furthermore, the difference in information seeking between more educated Americans versus less could exacerbate health disparities and inequities of health literacy.

Finally, to the fourth paper, on the roles of assisters and automated decision support tools in consumers’ marketplace choices. This study assessed consumers’ search for health insurance marketplace plans extended through the Affordable Care Act, looking into the experience of 32 “assisters,” trained professionals who helped consumers navigate their choice of plans. These people include the official “navigators” conceived and funded by the ACA, certified application counselors, and other pepole who help consumers identify health insurance plans on the marketplaces. For context, the authors note that over 5,000 marketplace assister programs provided outreach and enrollment to consumers in the third open enrollment period 2015-16. Additional context here is that President Trump cut funding for navigators in federally facilitated marketplaces by over 80%, documented here in a report from the Kaiser Family Foundation. The bottom line of this fourth paper is that consumers need support to understand their health plan choices, but resourcing that support is costly and politically controversial in the current political environment.

Taken together, these four papers from Health Affairs lead to the following themes:

By 2019, patients in the U.S. have been compelled, by both the structure of the ACA marketplaces and the evolving consumer-directed health plan designs adopted by commercial plans and employers. to take on aspects of consumer behavior relative to personal health care choices — related to both health insurance and financing, along with clinician decisions.

Not all patients are willing to or in the moment able to exercise these consumer muscles, whether due to health literacy and education differences, access to digital health tools (including broadband connectivity), or simply lower willingness to engage.

Even when willing and fully armed with digital health tools and information access, being a “health care consumer” can lead people to make sub-optimal decisions for themselves, and potentially find their clinicians in compromised roles when making therapeutic treatment choices.

As Alan Weil writes in the March 2019 Health Affairs Editor-in-Chief introduction, there are “ups and downs of expecting patients to act as consumers.”

Health Populi’s Hot Points:  We see discussions about health care consumerism in every major health care journal, and the popular press, as well. Just two weeks ago, I read the cover story, “It’s still the prices, stupid,” shown here from the cover of Modern Healthcare dated 25 February 2019.

In the article to which this assertion ties, Harris Meyer talks about the growing push for price regulation in the U.S. — most visibly for prescription drugs, and increasingly for other line items in th medical bill like nursing home care, hospital care, and physician services.

Sixteen pages after the start of the price regulation article in Modern Healthcare, you’ll find another story on hospitals looking for ways to address social needs: housing, transportation, and healthy food access among them. I’ve argued that, instead of allocating over 18% of U.S. GDP to medical care spending, America should reallocate some of these dollars to SDoH. Just today, the New York Times featured an in-depth article on the poor air quality in Pittsburgh, one of the key influences on human health that can be at least as bad for a population as smoking a pack of cigarettes a day — with subsequent negative health and financial impacts on the individual and community.

While our health care trade press re-iterates Uwe Reinhardt’s and Gerard Anderson’s observation that, “It’s the prices, stupid” from back in 2003, closer to peoples’ homes and real lives, Consumer Reports and TIME magazine also try and support Americans’ health consumer muscle/brain) development and ethos.

Here. you can see CR’s research into prescription drug prices, pain pills, over-treatment, picking the right doctor, and protecting one’s privacy.

Many of us who chat via Twitter and LinkedIn, and in health care conferences throughout the year, have wrestled with what we “call” patients — whether consumers, people, citizens.

I became a citizen of Italy, and thus the European Union, last year, retaining my U.S. citizenship. When I proudly and humbly took my oath at the Italian Consulate in Philadelphia, I immediately became a health citizen of the EU, along with being covered by the privacy protections of the GDPR. This was one of those lifetime lightbulb moments for me both personally and professionally.

It led me to reinforce my believe in health citizenship for my fellow and sister Americans. I’ll be sharing more about that with you all in my upcoming book on health care consumerism and beyond….so stay tuned for that plotline. For now, go read the entire March 2019 issue of Health Affairs to challenge and inform your understanding of the patient-vs-consumer debate.

The post Patients, Health Consumers, People, Citizens: Who Are We In America? appeared first on HealthPopuli.com.

Patients, Health Consumers, People, Citizens: Who Are We In America? posted first on https://carilloncitydental.blogspot.com

[titheguerrero]

Patients, Health Consumers, People, Citizens: Who Are We In America?

“Patients as Consumers” is the theme of the Health Affairs issue for March 2019. Research published in this trustworthy health policy publication covers a wide range of perspectives, including the promise of patients’ engagement with data to drive health outcomes, citizen science and participatory research where patients crowdsource cures, the results of financial incentives in value-based plans to drive health care “shopping” and decision making, and ultimately, whether the concept of patients-as-consumers is useful or even appropriate.

Health care consumerism is a central focus in my work, and so it’s no surprise that I’ve consumed every bit of this publication. [In full disclosure, last year when this issue was being curated, I was part of a team that proposed to submit an article for the publication, but our submission was not accepted].

I will weave findings from four of the papers in this post, for purposes of getting to the question I ask in the title above: what is the right noun to use for U.S. patients in 2019 — patients, consumers, people, health citizens?

The paper that asserts “no” to the question comes from Michael Gusmano, Karen Maschke, and Mildred Solomon, all associated with the Hastings Center which does research into bioethics. The authors note that “consumer-driven” health care is, “associated with neoliberal efforts to emphasize market factors in health reform,” de-emphasizing goernment regulation and financing. This concept can be potentiallyu harmful, they believe, assuming that health are is a traditional market. “A consumer metaphor places disproportionate burdesn on patients to reduce health care costs,” they posit, placing the burden of cost containment on patients. While price transparency is a sound concept, it’s not a panacea, the authors contend. “Patient-centered” approaches are constructive because they bring patients’ values into clinical care. Asking consumers to shop for services and be “prudent purchasers” of services? That’s too great a burden to put on patients, which could pressure clinicians to make unsound treatment decisions.

Now consider what happens when consumers (the noun chosen by the authors of the second paper I’m adding to the mix) access data, information and tools for self-management in health care. Karandeep Singh of the University of Michigan (GO BLUE! my alma mater) and colleagues track the growth of consumer-facing digital health tools, and initiatives leading to consumers’ engagement with websites and apps. The article plots a brief history of the HITECH Act which fostered EHR adoption among clinicians and hospitals, the Blue Button program at the Veterans Health Administration enabling patients’ access to health data, OpenNotes, patient-generated data through wearable tech and smartphone apps, and consumer-grade medical devices like the AliveCor ECG and KardiaBand accessory for the Apple watch. Singh et. al. point to limitations of consumers’ universal embrace and sustained use of these digital health tools, including low adoption of patient portals (especially among younger people, members of minority groups, healthy people, and those with less education), patient-generated data’s lack of interoperability with electronic health records, search engine dependence (that is, when “paging Dr. Google” yields sub-optimal results for the patient to act on), and lack of transparency and useful, high-quality data online. The authors call for improved regulation from the Federal Trade Commission (FTC) which is the U.S. agency responsible for monitoring claims and the use of personal data out-of-context.

Article #3 in my deep dive here extends the second analysis into digital health information, focusing on Americans’ use of quality information describing doctors. Mark Schlesinger of Yale partnered with seven other researchers from RAND and other organizations to explain the history of clinician quality information (“report cards,” patient experience surveys and clinical quality metrics, among the different types of information available to consumers) and results of surveys assessing the impact of this information on consumers’ choices of physicians. The research found that peoples’ exposure to clinician quality information doubled between 2010 and 2015, and more consumers did seek quality metrics with differences across sub-groups of people (e.g., recial and ethnic minority consumers were better informed that whites over time, and people with more education also saw more of the quality information). The good news: that Americans have become more aware of information comparing clinician quality, and more often seek that information than they have in the past — especially other patients’ comments about doctors. The authors warn, though, that consumers may tend to trust that patient-reported information more than some of hte more objective clinician quality and safety metrics. Furthermore, the difference in information seeking between more educated Americans versus less could exacerbate health disparities and inequities of health literacy.

Finally, to the fourth paper, on the roles of assisters and automated decision support tools in consumers’ marketplace choices. This study assessed consumers’ search for health insurance marketplace plans extended through the Affordable Care Act, looking into the experience of 32 “assisters,” trained professionals who helped consumers navigate their choice of plans. These people include the official “navigators” conceived and funded by the ACA, certified application counselors, and other pepole who help consumers identify health insurance plans on the marketplaces. For context, the authors note that over 5,000 marketplace assister programs provided outreach and enrollment to consumers in the third open enrollment period 2015-16. Additional context here is that President Trump cut funding for navigators in federally facilitated marketplaces by over 80%, documented here in a report from the Kaiser Family Foundation. The bottom line of this fourth paper is that consumers need support to understand their health plan choices, but resourcing that support is costly and politically controversial in the current political environment.

Taken together, these four papers from Health Affairs lead to the following themes:

By 2019, patients in the U.S. have been compelled, by both the structure of the ACA marketplaces and the evolving consumer-directed health plan designs adopted by commercial plans and employers. to take on aspects of consumer behavior relative to personal health care choices — related to both health insurance and financing, along with clinician decisions.

Not all patients are willing to or in the moment able to exercise these consumer muscles, whether due to health literacy and education differences, access to digital health tools (including broadband connectivity), or simply lower willingness to engage.

Even when willing and fully armed with digital health tools and information access, being a “health care consumer” can lead people to make sub-optimal decisions for themselves, and potentially find their clinicians in compromised roles when making therapeutic treatment choices.

As Alan Weil writes in the March 2019 Health Affairs Editor-in-Chief introduction, there are “ups and downs of expecting patients to act as consumers.”

Health Populi’s Hot Points:  We see discussions about health care consumerism in every major health care journal, and the popular press, as well. Just two weeks ago, I read the cover story, “It’s still the prices, stupid,” shown here from the cover of Modern Healthcare dated 25 February 2019.

In the article to which this assertion ties, Harris Meyer talks about the growing push for price regulation in the U.S. — most visibly for prescription drugs, and increasingly for other line items in th medical bill like nursing home care, hospital care, and physician services.

Sixteen pages after the start of the price regulation article in Modern Healthcare, you’ll find another story on hospitals looking for ways to address social needs: housing, transportation, and healthy food access among them. I’ve argued that, instead of allocating over 18% of U.S. GDP to medical care spending, America should reallocate some of these dollars to SDoH. Just today, the New York Times featured an in-depth article on the poor air quality in Pittsburgh, one of the key influences on human health that can be at least as bad for a population as smoking a pack of cigarettes a day — with subsequent negative health and financial impacts on the individual and community.

While our health care trade press re-iterates Uwe Reinhardt’s and Gerard Anderson’s observation that, “It’s the prices, stupid” from back in 2003, closer to peoples’ homes and real lives, Consumer Reports and TIME magazine also try and support Americans’ health consumer muscle/brain) development and ethos.

Here. you can see CR’s research into prescription drug prices, pain pills, over-treatment, picking the right doctor, and protecting one’s privacy.

Many of us who chat via Twitter and LinkedIn, and in health care conferences throughout the year, have wrestled with what we “call” patients — whether consumers, people, citizens.

I became a citizen of Italy, and thus the European Union, last year, retaining my U.S. citizenship. When I proudly and humbly took my oath at the Italian Consulate in Philadelphia, I immediately became a health citizen of the EU, along with being covered by the privacy protections of the GDPR. This was one of those lifetime lightbulb moments for me both personally and professionally.

It led me to reinforce my believe in health citizenship for my fellow and sister Americans. I’ll be sharing more about that with you all in my upcoming book on health care consumerism and beyond….so stay tuned for that plotline. For now, go read the entire March 2019 issue of Health Affairs to challenge and inform your understanding of the patient-vs-consumer debate.

The post Patients, Health Consumers, People, Citizens: Who Are We In America? appeared first on HealthPopuli.com.

Article source:Health Populi

[clubofinfo]

Expert: Hacking and “leaking” have become major news items. Are the leaks good or bad?  The answer depends on the nature of the leak. Are the leaks exposing crimes or covering them up? Are they for or against the public good? Following are some famous leaks or disclosures that have done good. Beginning in 1969, Daniel Ellsberg started xeroxing the Vietnam war analysis known as the Pentagon Papers. Two years later the secret documents were finally ready and published for the first time. This disclosure of classified information allowed the public to learn about the reality of what was going on in Vietnam in contrast to the rosy government and military assessments. It was revealed that four U.S. administrations starting with Truman had misled the public and lied about their real intentions and military actions from undermining the 1954 Geneva settlement to secretly bombing Cambodia. The Pentagon Papers led many more Americans to oppose the war and hastened its end. In 1975 former CIA agent Philip Agee published his book Inside the Company: CIA Diary. Patrick Breslin of the Washington Post described the book this way: “In this book Agee has provided the most complete description yet of what the CIA does abroad. In entry after numbing entry, U.S. foreign policy in Latin America is pictured as a web of deceit, hypocrisy and corruption.” Agee identified corrupt politicians plus American and foreign CIA operatives throughout Latin America. His expose greatly reduced CIA powers of influence and probably saved many thousands of lives. In 1984 former CIA Director of the Angola Task Force, John Stockwell, published his book In Search of Enemies.  He documented how the CIA had trained, armed and otherwise funded a ‘rebel’ group to wage war in Angola ultimately leading to hundreds of thousands of deaths. Stockwell described how the CIA spread disinformation as part of the ‘information war’. Stockwell’s expose made it more difficult for the CIA to continue this kind of deceit, at least for some years. In 2010 Chelsea Manning leaked files revealing more war crimes and government deception. He copied the Afghanistan and Iraq war logs as well as video, then passed on these files to Wikileaks.  One of the videos, named Collateral Murder, shows US soldiers in an Apache helicopter attacking and killing two Reuters cameramen along with ten other civilians in Iraq. Manning went to prison while the soldiers who carried out the murder have never been tried let alone convicted. The war logs and videos confirmed what many had suspected: in its war against Iraqi insurgents, the US was indiscriminately killing civilians. Edward Snowden is perhaps the most well known modern “leaker”.  He copied files from the NSA computer system onto flash drives then made that public. The files confirmed that NSA was spying on foreign leaders including allies like Germany’s Angela Merkel. They showed how the NSA was collecting data on the computer and phone communications of nearly all American citizens. The revelations exposed that Director of National Intelligence James Clapper had lied under oath to Congress when he testified before Congress two months earlier. The leaks by Snowden exposed NSA violations of the US Constitution regarding right to privacy. U.S. Attorney General Eric Holder said that Snowden performed a “public service”. Finally, in July 2016, emails from the Democratic National Committee were leaked to the public. They revealed that DNC leadership was deeply biased in favor of Hillary Clinton, providing her with advantages and preventing a fair primary election race. The emails substantiated the criticisms which the Sanders campaign had been making for some time. From a progressive perspective, all the above “leaks” and disclosures were good. They exposed lies, crimes and corruption. But leaks can also be used for evil purposes. One example is how the CIA agent Valerie Plame was “outed” in 2003. Her identity as a clandestine CIA officer was leaked to Robert Novak who published the information in the Washington Post. The disclosure came from Scooter Libby who worked closely with Vice President Dick Cheney. Plame’s career at the CIA was publicly exposed to punish her husband, former Ambassador Joseph Wilson, after he went to Central Africa and disproved the Bush Administration’s claims about yellow cake uranium going to Iraq to make weapons of mass destruction. The administration leaked the information about Wilson’s wife to retaliate and send a warning to others: If you cross us, you will pay a price. In this case the “leak” came from the Vice President’s office with the intention of stopping those who might expose the Administration’s lies to justify the war on Iraq. In the past 8 months, leaks of the DNC and John Podesta emails have been used to foster an anti-Russia hysteria. Despite the fact that Wikileaks claims they did not receive the emails from Russian sources, the Democratic leadership and their acolytes have amplified this accusation to the point that it has become one of their main themes. This has served multiple goals: deflecting attention from the content of the leaks, blaming the subsequent election loss on a foreign power and reinforcing the neoconservative goal of demonizing Russia and blocking attempts to de-escalate the Cold War or give up on U.S. unilateral supremacy. Currently there are many leaks occurring in the Trump administration.  The leaks appear to be coming from the Security Services themselves.  President Trump’s private phone conversations with other foreign leaders quickly became public. Then, a December phone conversation between incoming National Security Director Mike Flynn and the Russian ambassador was revealed …though not the actual content. This led to a storm of insinuations that ultimately led to Flynn’s resignation.  There is nothing unusual or wrong with an incoming top official meeting with the ambassador from any country to gauge the relationship and challenges. But it led to Flynn’s departure when it was revealed that he had not accurately informed the Vice President. What is going on? It’s unclear what the offense was. James Clapper lied under oath to Congress and continued without pause. The Flynn case was treated very differently.  Some believe there is a concerted effort by the CIA and other security services to undermine Trump’s goal of reducing tensions with Russia. Former candidate for President and Ohio Congressman Denis Kucinich has said: General Flynn has admitted misleading the Vice President but I think we need to look at this a little bit deeper. A phone call from the incoming national security director was intercepted and the contents given to the media …. at the core of this is an effort by some in the intelligence community to upend a positive relationship between the U.S. and Russia…. There are people trying to separate the U.S. and Russia so that the military industrial and intelligence axis can cash in…. The American people need to know that there’s a game going on inside the intelligence community there are those who …want to reignite the cold war. That’s what’s at the bottom of all this …Wake Up America! Trump’s policies on education, health care, environmental protection, immigration and law enforcement are horrible from a progressive perspective.  But Trump campaigned for stopping the “regime change” foreign policy championed by neoconservatives and the CIA. He called for reducing conflict with Russia and working together to combat terrorists trying to overthrow Syrian government. This policy in favor of peace is apparently being undermined from within by elements in the secret services. They seem to be the ones doing the leaking and it’s not for the public good. http://clubof.info/

[realselfblog]

Patients, Health Consumers, People, Citizens: Who Are We In America?

“Patients as Consumers” is the theme of the Health Affairs issue for March 2019. Research published in this trustworthy health policy publication covers a wide range of perspectives, including the promise of patients’ engagement with data to drive health outcomes, citizen science and participatory research where patients crowdsource cures, the results of financial incentives in value-based plans to drive health care “shopping” and decision making, and ultimately, whether the concept of patients-as-consumers is useful or even appropriate.

Health care consumerism is a central focus in my work, and so it’s no surprise that I’ve consumed every bit of this publication. [In full disclosure, last year when this issue was being curated, I was part of a team that proposed to submit an article for the publication, but our submission was not accepted].

I will weave findings from four of the papers in this post, for purposes of getting to the question I ask in the title above: what is the right noun to use for U.S. patients in 2019 — patients, consumers, people, health citizens?

The paper that asserts “no” to the question comes from Michael Gusmano, Karen Maschke, and Mildred Solomon, all associated with the Hastings Center which does research into bioethics. The authors note that “consumer-driven” health care is, “associated with neoliberal efforts to emphasize market factors in health reform,” de-emphasizing government regulation and financing. This concept can be potentially harmful, they believe, assuming that health care is a traditional market. “A consumer metaphor places disproportionate burdens on patients to reduce health care costs,” they posit, placing the burden of cost containment on patients. While price transparency is a sound concept, it’s not a panacea, the authors contend. “Patient-centered” approaches are constructive because they bring patients’ values into clinical care. Asking consumers to shop for services and be “prudent purchasers” of services? That’s too great a burden to put on patients, which could pressure clinicians to make unsound treatment decisions.

Now consider what happens when consumers (the noun chosen by the authors of the second paper I’m adding to the mix) access data, information and tools for self-management in health care. Karandeep Singh of the University of Michigan (GO BLUE! my alma mater) and colleagues track the growth of consumer-facing digital health tools and initiatives leading to consumers’ engagement with websites and apps. The article plots a brief history of the HITECH Act which fostered EHR adoption among clinicians and hospitals, the Blue Button program at the Veterans Health Administration enabling patients’ access to health data, OpenNotes, patient-generated data through wearable tech and smartphone apps, and consumer-grade medical devices like the AliveCor ECG and KardiaBand accessory for the Apple Watch. Singh et. al. point to limitations of consumers’ universal embrace and sustained use of these digital health tools, including low adoption of patient portals (especially among younger people, members of minority groups, healthy people, and those with less education), patient-generated data lack of interoperability with electronic health records, search engine over-dependence (that is, when “paging Dr. Google” yields sub-optimal results for the patient to act on), and lack of transparent and useful, high-quality data online. The authors call for improved regulation from the Federal Trade Commission (FTC), the U.S. agency responsible for monitoring claims and the use of personal data out-of-health-context.

Article #3 in my deep dive here extends the second analysis into digital health information, next focusing on Americans’ use of quality information on doctors. Mark Schlesinger of Yale partnered with seven other researchers from RAND and other organizations to explain the history of clinician quality information (“report cards,” patient experience surveys and clinical quality metrics, among the different types of information available to consumers) and results of surveys assessing the impact of this information on a consumer’s choice of physician. The research found that peoples’ exposure to clinician quality information doubled between 2010 and 2015, and more consumers sought quality metrics — albeit, with differences across sub-groups of people (e.g., racial and ethnic minority consumers were better informed that whites over time, and people with more education also saw more of the quality information). The good news: that Americans have become more aware of information comparing clinician quality, and more often seek that information than they have in the past — especially other patients’ comments about doctors. The authors warn, though, that consumers may tend to over-trust and -use that patient-reported information more than some of the objective clinician quality and safety metrics. Furthermore, the difference in information seeking between more educated Americans versus less could exacerbate health disparities and the inequities of health literacy.

Finally, to the fourth paper, looking at the roles of assisters and automated decision support tools in consumers’ health insurance marketplace choices. This study assessed consumers’ search for health insurance marketplace plans extended through the Affordable Care Act, analyzing the experience of 32 “assisters,” trained professionals who help consumers navigate their choice of plans. These people included the official “navigators” conceived and funded by the ACA, certified application counselors, and other people who help consumers identify health insurance plans on the marketplaces. For context, the authors note that over 5,000 marketplace assister programs provided outreach and enrollment to consumers in the third open enrollment period 2015-16. Additional context here is that President Trump cut funding for navigators in federally facilitated marketplaces by over 80%, documented here in a report from the Kaiser Family Foundation. The bottom line of this fourth paper is that consumers need support to understand their health plan choices, but resourcing that support is costly and politically controversial in the current political environment.

Taken together, these four papers from Health Affairs lead to the following themes:

By 2019, patients in the U.S. have been compelled, by both the structure of the ACA marketplaces and the evolving consumer-directed health plan designs adopted by commercial plans and employers. to take on aspects of consumer behavior relative to personal health care choices — related to both health insurance and financing, along with clinician decisions.

Not all patients are willing to or in the moment able to exercise these consumer muscles, whether due to health literacy and education differences, access to digital health tools (including broadband connectivity), or simply lower willingness to engage.

Even when willing and fully armed with digital health tools and information access, being a “health care consumer” can lead people to make sub-optimal decisions for themselves, and potentially find their clinicians in compromised roles when making therapeutic treatment choices.

As Alan Weil summarized in the March 2019 Health Affairs Editor-in-Chief introduction, there are “ups and downs of expecting patients to act as consumers.”

Health Populi’s Hot Points: We can find discussions about health care consumerism in every major health care journal, and the popular press, as well. Just two weeks ago, I read the cover story, “It’s still the prices, stupid,” shown here from the cover of Modern Healthcare dated 25 February 2019.

In the article to which this assertion ties, Harris Meyer talks about the growing push for price regulation in the U.S. — most visibly for prescription drugs, and increasingly for other line items in the medical bill like nursing home care, hospital care, and physician services.

Sixteen pages after the start of the price regulation article in Modern Healthcare, you’ll find another story on hospitals looking for ways to address social needs: housing, transportation, and healthy food access among them. I’ve argued that, instead of allocating over 18% of U.S. GDP to medical care spending, America should reallocate some of these dollars to SDoH. Just today, the New York Times featured an in-depth article on the poor air quality in Pittsburgh, one of the key influences on human health that can be at least as bad for a population as smoking a pack of cigarettes a day — with subsequent negative health and financial impacts on the individual and community.

While our health care trade press re-iterates Uwe Reinhardt’s and Gerard Anderson’s observation that, “It’s the prices, stupid” from back in 2003, closer to peoples’ homes and real lives, Consumer Reports and TIME magazine also try and support Americans’ health consumer muscle/brain) development and ethos.

Here in my curated selection of CR covers, you’ll find research into prescription drug prices, pain pills, over-treatment, picking the right doctor, and protecting one’s privacy.

Many of us who chat via Twitter and LinkedIn, and in health care conferences throughout the year, have wrestled with what we should “call” patients — whether consumers, people, citizens. This is not a new-new question, I assure you. Been there. Asked that.

As my thinking continues to evolve, I will share some of the most recent segment my learning journey. I became a citizen of Italy, and thus the European Union (EU), last year, retaining my U.S. citizenship. When I proudly and humbly took my oath at the Italian Consulate in Philadelphia, I immediately became a health citizen of the EU, along with being covered by the privacy protections of the GDPR. This was one of those lifetime lightbulb moments for me both personally and professionally.

It led me to reinforce my belief in the concept of health citizenship for my fellow and sister Americans. I’ll be sharing more about that with you in my upcoming book on health care consumerism and beyond….so stay tuned for that plotline. For now, please read the entire March 2019 issue of Health Affairs to challenge and inform your own appreciation for and understanding of the patient-vs-consumer debate. Words do matter.

The post Patients, Health Consumers, People, Citizens: Who Are We In America? appeared first on HealthPopuli.com.

Patients, Health Consumers, People, Citizens: Who Are We In America? posted first on http://dentistfortworth.blogspot.com

[realselfblog]

Patients, Health Consumers, People, Citizens: Who Are We In America?

“Patients as Consumers” is the theme of the Health Affairs issue for March 2019. Research published in this trustworthy health policy publication covers a wide range of perspectives, including the promise of patients’ engagement with data to drive health outcomes, citizen science and participatory research where patients crowdsource cures, the results of financial incentives in value-based plans to drive health care “shopping” and decision making, and ultimately, whether the concept of patients-as-consumers is useful or even appropriate.

Health care consumerism is a central focus in my work, and so it’s no surprise that I’ve consumed every bit of this publication. [In full disclosure, last year when this issue was being curated, I was part of a team that proposed to submit an article for the publication, but our submission was not accepted].

I will weave findings from four of the papers in this post, for purposes of getting to the question I ask in the title above: what is the right noun to use for U.S. patients in 2019 — patients, consumers, people, health citizens?

The paper that asserts “no” to the question comes from Michael Gusmano, Karen Maschke, and Mildred Solomon, all associated with the Hastings Center which does research into bioethics. The authors note that “consumer-driven” health care is, “associated with neoliberal efforts to emphasize market factors in health reform,” de-emphasizing government regulation and financing. This concept can be potentially harmful, they believe, assuming that health care is a traditional market. “A consumer metaphor places disproportionate burdens on patients to reduce health care costs,” they posit, placing the burden of cost containment on patients. While price transparency is a sound concept, it’s not a panacea, the authors contend. “Patient-centered” approaches are constructive because they bring patients’ values into clinical care. Asking consumers to shop for services and be “prudent purchasers” of services? That’s too great a burden to put on patients, which could pressure clinicians to make unsound treatment decisions.

Now consider what happens when consumers (the noun chosen by the authors of the second paper I’m adding to the mix) access data, information and tools for self-management in health care. Karandeep Singh of the University of Michigan (GO BLUE! my alma mater) and colleagues track the growth of consumer-facing digital health tools and initiatives leading to consumers’ engagement with websites and apps. The article plots a brief history of the HITECH Act which fostered EHR adoption among clinicians and hospitals, the Blue Button program at the Veterans Health Administration enabling patients’ access to health data, OpenNotes, patient-generated data through wearable tech and smartphone apps, and consumer-grade medical devices like the AliveCor ECG and KardiaBand accessory for the Apple Watch. Singh et. al. point to limitations of consumers’ universal embrace and sustained use of these digital health tools, including low adoption of patient portals (especially among younger people, members of minority groups, healthy people, and those with less education), patient-generated data lack of interoperability with electronic health records, search engine over-dependence (that is, when “paging Dr. Google” yields sub-optimal results for the patient to act on), and lack of transparent and useful, high-quality data online. The authors call for improved regulation from the Federal Trade Commission (FTC), the U.S. agency responsible for monitoring claims and the use of personal data out-of-health-context.

Article #3 in my deep dive here extends the second analysis into digital health information, next focusing on Americans’ use of quality information on doctors. Mark Schlesinger of Yale partnered with seven other researchers from RAND and other organizations to explain the history of clinician quality information (“report cards,” patient experience surveys and clinical quality metrics, among the different types of information available to consumers) and results of surveys assessing the impact of this information on a consumer’s choice of physician. The research found that peoples’ exposure to clinician quality information doubled between 2010 and 2015, and more consumers sought quality metrics — albeit, with differences across sub-groups of people (e.g., racial and ethnic minority consumers were better informed that whites over time, and people with more education also saw more of the quality information). The good news: that Americans have become more aware of information comparing clinician quality, and more often seek that information than they have in the past — especially other patients’ comments about doctors. The authors warn, though, that consumers may tend to over-trust and -use that patient-reported information more than some of the objective clinician quality and safety metrics. Furthermore, the difference in information seeking between more educated Americans versus less could exacerbate health disparities and the inequities of health literacy.

Finally, to the fourth paper, looking at the roles of assisters and automated decision support tools in consumers’ health insurance marketplace choices. This study assessed consumers’ search for health insurance marketplace plans extended through the Affordable Care Act, analyzing the experience of 32 “assisters,” trained professionals who help consumers navigate their choice of plans. These people included the official “navigators” conceived and funded by the ACA, certified application counselors, and other people who help consumers identify health insurance plans on the marketplaces. For context, the authors note that over 5,000 marketplace assister programs provided outreach and enrollment to consumers in the third open enrollment period 2015-16. Additional context here is that President Trump cut funding for navigators in federally facilitated marketplaces by over 80%, documented here in a report from the Kaiser Family Foundation. The bottom line of this fourth paper is that consumers need support to understand their health plan choices, but resourcing that support is costly and politically controversial in the current political environment.

Taken together, these four papers from Health Affairs lead to the following themes:

By 2019, patients in the U.S. have been compelled, by both the structure of the ACA marketplaces and the evolving consumer-directed health plan designs adopted by commercial plans and employers. to take on aspects of consumer behavior relative to personal health care choices — related to both health insurance and financing, along with clinician decisions.

Not all patients are willing to or in the moment able to exercise these consumer muscles, whether due to health literacy and education differences, access to digital health tools (including broadband connectivity), or simply lower willingness to engage.

Even when willing and fully armed with digital health tools and information access, being a “health care consumer” can lead people to make sub-optimal decisions for themselves, and potentially find their clinicians in compromised roles when making therapeutic treatment choices.

As Alan Weil summarized in the March 2019 Health Affairs Editor-in-Chief introduction, there are “ups and downs of expecting patients to act as consumers.”

Health Populi’s Hot Points: We can find discussions about health care consumerism in every major health care journal, and the popular press, as well. Just two weeks ago, I read the cover story, “It’s still the prices, stupid,” shown here from the cover of Modern Healthcare dated 25 February 2019.

In the article to which this assertion ties, Harris Meyer talks about the growing push for price regulation in the U.S. — most visibly for prescription drugs, and increasingly for other line items in the medical bill like nursing home care, hospital care, and physician services.

Sixteen pages after the start of the price regulation article in Modern Healthcare, you’ll find another story on hospitals looking for ways to address social needs: housing, transportation, and healthy food access among them. I’ve argued that, instead of allocating over 18% of U.S. GDP to medical care spending, America should reallocate some of these dollars to SDoH. Just today, the New York Times featured an in-depth article on the poor air quality in Pittsburgh, one of the key influences on human health that can be at least as bad for a population as smoking a pack of cigarettes a day — with subsequent negative health and financial impacts on the individual and community.

While our health care trade press re-iterates Uwe Reinhardt’s and Gerard Anderson’s observation that, “It’s the prices, stupid” from back in 2003, closer to peoples’ homes and real lives, Consumer Reports and TIME magazine also try and support Americans’ health consumer muscle/brain) development and ethos.

Here in my curated selection of CR covers, you’ll find research into prescription drug prices, pain pills, over-treatment, picking the right doctor, and protecting one’s privacy.

Many of us who chat via Twitter and LinkedIn, and in health care conferences throughout the year, have wrestled with what we should “call” patients — whether consumers, people, citizens. This is not a new-new question, I assure you. Been there. Asked that.

As my thinking continues to evolve, I will share some of the most recent segment my learning journey. I became a citizen of Italy, and thus the European Union (EU), last year, retaining my U.S. citizenship. When I proudly and humbly took my oath at the Italian Consulate in Philadelphia, I immediately became a health citizen of the EU, along with being covered by the privacy protections of the GDPR. This was one of those lifetime lightbulb moments for me both personally and professionally.

It led me to reinforce my belief in the concept of health citizenship for my fellow and sister Americans. I’ll be sharing more about that with you in my upcoming book on health care consumerism and beyond….so stay tuned for that plotline. For now, please read the entire March 2019 issue of Health Affairs to challenge and inform your own appreciation for and understanding of the patient-vs-consumer debate. Words do matter.

The post Patients, Health Consumers, People, Citizens: Who Are We In America? appeared first on HealthPopuli.com.

Patients, Health Consumers, People, Citizens: Who Are We In America? posted first on http://dentistfortworth.blogspot.com