#Healthcare Privacy

[healthcaretechnologynews]

Ethical Considerations in Patient Data Usage: Balancing Privacy and Progress

Introduction

In today's digital age, the healthcare industry is undergoing a transformative revolution fueled by data-driven technologies. Using patient data holds immense potential for advancing medical research, personalized treatment plans, and healthcare outcomes. However, with this great potential comes a pressing need to navigate the complex ethical considerations surrounding patient data usage. Striking a delicate balance between the benefits of progress and the preservation of patient privacy is a challenge that demands careful thought and robust safeguards.

Read Full Blog Here: https://www.anervea.com/ethical-considerations-in-patient-data-usage-balancing-privacy-and-progress

The Promise of Data-Driven Healthcare

Integrating patient data, ranging from electronic health records to wearables and genetic information, promises revolutionary changes in healthcare. By analyzing vast datasets, medical professionals and researchers can identify patterns, correlations, and insights that can lead to more accurate diagnoses, tailored treatment plans, and even the discovery of new therapies.

Ethical Imperative #1: Patient Privacy

Central to any discussion on patient data usage is the protection of individual privacy. Patients entrust their most intimate health information to healthcare providers, and this trust forms the cornerstone of the doctor-patient relationship. Ensuring this data remains secure and confidential is not just a legal obligation but an ethical imperative.

Innovations such as de-identification, anonymization, and strict access controls are crucial in safeguarding patient privacy. It's essential to strip data of personally identifiable information (PII) before using it for research while still retaining its utility.

Ethical Imperative #2: Informed Consent

Collecting and using patient data for research and treatment should be done with explicit and informed consent. Patients should be fully aware of how their data will be used, who will have access to it, and the potential risks and benefits. Obtaining consent ensures that patients have agency over their data and the decisions made based on it.

Ethical Imperative #3: Transparency

Transparency is paramount in maintaining trust. Healthcare organizations, researchers, and data analysts must be transparent about data collection practices, usage policies, and security measures. Clear communication helps patients make informed choices about participating in data-driven initiatives.

Balancing Progress and Privacy

While the potential benefits of data-driven healthcare are clear, it's essential to balance these with preserving patient privacy.

Data Minimization: Only collect the minimum amount of data necessary for the intended purpose. Limiting data collection reduces the potential risk if a breach occurs.

Purpose Limitation: Patient data should be used only for the specific purpose for which it was collected. Avoiding 'mission creep' ensures patient information isn't repurposed without explicit consent.

Secure Infrastructure: Investing in robust cybersecurity measures, encryption protocols, and access controls is crucial in safeguarding patient data from unauthorized access.

Oversight and Accountability: Establishing regulatory frameworks and governance mechanisms that hold healthcare organizations and researchers accountable for ethical data usage is essential.

Education and Empowerment: Educating patients about the benefits and risks of data sharing empowers them to make informed decisions about their participation.

Conclusion

The ethical considerations surrounding patient data usage underscore the delicate balance the healthcare industry must navigate. Achieving progress in medical research and treatment while upholding patient privacy requires a comprehensive approach encompassing informed consent, transparency, data security, and accountability. As technology continues to shape the future of healthcare, the industry must remain committed to ethical principles, ensuring that patient data remains a force for good while respecting individual rights and autonomy. By embracing these ethical imperatives, the healthcare sector can drive innovation while maintaining the trust vital for patient well-being.

Visit our website now: https://www.anervea.com/

[adrianasgnn]

The vital role of nursing in the diagnosis and management of acute & chronic GvHD [Video]

[justinspoliticalcorner]

Christopher Wiggins at The Advocate:

A Houston-based surgeon stands accused of betraying the privacy of transgender kids who weren’t under his care by stealing their medical information and handing it over to a far-right extremist who vehemently opposes transgender rights. The federal indictment, unsealed on Monday, details Dr. Eithan Haim’s alleged unauthorized access and disclosure of sensitive patient information at Texas Children’s Hospital. Haim, 34, completed his residency at Baylor College of Medicine and reportedly reactivated his access to the hospital’s electronic records system in April 2023. He is accused of illicitly obtaining patient names, treatment codes, and attending physician details, which he then shared with conservative activist Christopher Rufo. Rufo, known for his hardline stance against transgender rights, used the information to publish an exposé claiming the hospital continued to provide gender-affirming care for minors despite a public announcement to halt such services.

The indictment alleges Haim accessed this sensitive information under false pretenses and with malicious intent, aiming to harm Texas Children’s Hospital. Haim’s actions followed a 2022 opinion from Republican Texas Attorney General Ken Paxton, labeling gender-affirming care for minors as a form of child abuse. Gov. Greg Abbott, a Republican, subsequently directed the Texas Department of Family and Protective Services to investigate parents seeking such care for their children. In response, Texas Children’s Hospital announced it would pause all gender-affirming services for minors to comply with these directives and protect its staff and patients from potential legal consequences.

Dr. Eithan Haim, who leaked the health records of trans kids to far-right anti-LGBTQ+ extremist Christopher Rufo, is facing charges of violation patient privacy.

[odinsblog]

When the United States Supreme Court overturned Roe v. Wade in 2022’s Dobbs v. Jackson Women’s Health Organization, Justice Samuel Alito’s majority opinion smugly declared that “nothing in this opinion should be understood to cast doubt on precedents that do not concern abortion.” Alito mocked the dissent’s concern that getting rid of abortion would ultimately imperil things like access to contraception, saying the dissent was “designed to stoke unfounded fear that our decision will imperil those other rights.”

But as anti-choice politicians and activists are now deploying Dobbs to try to roll back decades of law about bodily autonomy, it’s clear the dissent’s fears were quite well-founded.

Conservatives are not going to stop at unwinding the constitutional right to privacy, which underpins things like the right to obtain birth control and the right of same-sex couples to marry. After they destroy the agency of half the population by imposing so-called “fetal personhood” laws, they’re coming for the modern welfare state.

The blueprint

Over at the hard-right Washington Examiner, Conn Carroll, a former comms person for both the Heritage Foundation and Utah Sen. Mike Lee, has a lengthy list of laws he’d like to get rid of — everything from Medicaid, to Head Start, to the Supplemental Nutrition Assistance Program. Those laws, he argues, “penalize marriage and encourage alternative family formation.” Carroll’s goals therefore dovetail not only with forced-birth conservatives but also with forced-marriage conservatives.

(continue reading)

[commiepinkofag]

Take Action

KOSA Remains an Unconstitutional Censorship Bill 

KOSA remains woefully underinclusive—for example, Google's search results will not be impacted regardless of what they show young people, but Instagram is on the hook for a broad amount of content—while making it harder for young people in distress to find emotional, mental, and sexual health support. This version does only one important thing—it moves KOSA closer to passing in both houses of Congress, and puts us one step closer to enacting an online censorship regime that will hurt free speech and privacy for everyone.

TELL CONGRESS: OPPOSE THE KIDS ONLINE SAFETY ACT

[ai-innova7ions]

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[vergess]

tell us more about your crazy hut job?

I'm a "Mental Health Rehabilitation Technician," which is an extremely funny and verbose way to say I'm the overnight counselor for a halfway house.

A halfway house is a type of live-in program for people who just got out of long term hospitalization, prison, etc and need help re-adjusting to normal living. In most cases, halfway houses only rehab people for 6 months. But, in my case, it's for people who completed rehab for addiction, but because of their disabilities, still need support learning complex processes like navigating pharmacy orders and medicaid before they feel comfortable living on their own. So, they stay as long as it takes them to become comfortable managing their own insurance, utilities, meds, etc.

The position is analogous to being an overnight counselor at a summer camp, but year round and for adults with detailed but ultimately straightforward medical needs (eg: I am not qualified to do inject anything but epipens and insulin; any other injection is "a nursing home problem.")

The daytime crew does most of the actual hard work, in terms of teaching people how to interact with society and get their meds on time and so on. My job is to go through the checklist of things the state wants sterilized every day, and sterilize it all. Floors, counters, walls, trash cans, phones, etc etc. Since the facility is in an 8 bedroom house, not a medical building of any kind, there's a LOT of sterilizing of just about everything all the time. Once the sterilizing is done, I organize the paperwork from that day that the daycrew did.

And when clients need help they come to me overnight.

I help with anything from panic attacks to counting out medications to budgeting, though for the most part I'm just acting as The Keeper Of The Cigarettes.

Everyone is allowed to keep their cigarettes in their rooms, but most of them prefer to lock them in the office lockbox, since they're so expensive. If they want a smoke overnight, they come to me and I unlock the box and they take what they want. If they keep cigarettes in their room they're free to go smoke whenever as long as they do it at least 20 feet from the building.

Everyone currently living there has been there for at least a year, and the facility itself has existed for decades, so it is well known in town and by the residents. In town, no one would ever dare call "The Group Home" anything as derogatory as "the crazy hut," to be clear. I don't live in some kind of monstrous backwoods dystopia, haha.

But the residents can call their home what they like. I'm not gonna be the kind of asshole who tells people they can't have a bit of fun renaming their living situation. Especially when... you know... just because people call it "the group home" doesn't mean they actually respect our residents. If calling their house the crazy hut brings them joy and lets them feel bulwarked against the social exclusion they face, then crazy hut it is.

[ernestbruce]

bodily autonomy is for EVERYONE

every American citizen deserves to have complete dominion over their bodies

. women should not be treated like second-class or third-class citizens

. men don't need governmental permission to ejaculate into socks

. pregnant people must be able to get effective healthcare that prioritizes their lives and their ability to get pregnant in the future

[nonegenderleftpain]

I want everyone - every single one of you - to reach out to your healthcare providers and ask them what third-party tracking they use on any online portals you use to access your medical charts. I received a letter today from my local healthcare network ("local" in that they serve the entirety of the 300sq miles of Indianapolis and many of the surrounding cities) letting me know there had been a breach of my protected medical information. Everyone's, in fact. See, apparently they use both Facebook and Google tracking in their internal systems. This was never disclosed to me in the years I have been a patient there. I did not know that these megacorporations that are completely unrelated to healthcare could access my information, nor that every bit of communication I have had with my doctors over the online MyChart portal is run through their third-party tracking without my consent.

This information should be disclosed to the public long before you sign off to be a patient somewhere, but apparently it is not. So please ask your healthcare companies what tracking of your information there is in their systems, what it is for, and why it cannot be done without third parties like Facebook knowing about your reproductive healthcare. Or transition/gender healthcare. Or your HIV treatment. Demand these answers and do not take "because it's easy" as an answer. I am hoping that this will cause a class-action lawsuit, and if it does not, I will be taking legal action myself.

There is no reason third-party tracking needs to be used internally with sensitive documents. I urge you to find out what your healthcare providers are doing with your information and who else can access it. I will never be taking for granted that my medical documents will be protected, as clearly HIPAA is not enough to make these companies guarantee my privacy.

[peachyykira]

.

[longsufferingcritic]

Tfw you put a lot of effort into internet/computer security and privacy and have never fallen for a scam, but it ultimately doesn't matter because your SSN gets leaked by multiple corporations you've never heard of and didn't even know had your private info stored in the first place

[catherine-montvoisin]

PSA

If you use a telehealth service, it is almost certainly selling the information you give it to big tech companies in a way that is personally identifiable.

As in, these services are literally telling Facebook, Google, etc that your first name + last name + email address visited a website to access mental, reproductive, or addiction-related healthcare. They are sharing the questionnaire answers that you provide and what medications you buy.

And it appears to be legal.

[justinspoliticalcorner]

Jessica Valenti at Abortion, Every Day:

Indiana Attorney General Todd Rokita says that abortion reports aren’t medical records, and that they should be available to the public in the same way that death certificates are. While Rokita pushes for public reports, New Hampshire lawmakers are fighting over a Republican bill to collect and publish abortion data, and U.S. Sen. Tommy Tuberville has introduced a bill that would require the Department of Veterans Affairs to collect and provide data on the abortions performed at its facilities. Just last week, Kansas Gov. Laura Kelly vetoed legislation that would have required abortion providers to ask patients invasive and detailed questions about why they were getting abortions, and provide those answers in a report to the state.   All of these moves are part of a broader strategy that weaponizes abortion data to stigmatize patients and to prosecute providers. And while most states have some kind of abortion reporting law, legislators are increasingly trying to expand the scope of the data, and use it to dismantle women’s privacy.

Rokita’s ‘advisory opinion’, for example, argues that abortion data collected by the state isn’t private medical information and that in order to prosecute abortion providers, he needs detailed reports to be public. In the past, the state has issued reports on each individual abortion. But as a result of Indiana’s ban, there are only a handful of abortions being performed in the state. As such, the Department of Health decided to release aggregate reports to protect patient confidentiality, noting that individual reports could be “reverse engineered to identify patients—especially in smaller communities.” Rokita—best known for his harassment campaign against Dr. Caitlin Bernard, the abortion provider who treated a 10-year-old rape victim—is furious over the change. He says the only way he can arrest and prosecute people is if he gets tips from third parties, presumably anti-abortion groups that scour the abortion reports for alleged wrongdoing. He wants the state to either restore public individual reports, or to allow his office to go after abortion providers without a complaint by a third party. (Meaning, he could pursue investigations against doctors and hospitals without cause.)

Most troubling, though, is his insistence that women’s private abortion information isn’t private at all. Even though individual reports could be used to identify patients, Rokita claims that the terminated pregnancy reports [TPRs] aren’t medical records, and that they “do not belong to the patient.” [...] As I flagged last month, abortion reporting is becoming more and more important to anti-choice lawmakers and groups. Project 2025 includes an entire section on abortion reporting, for example, and major anti-abortion organizations like the Charlotte Lozier Institute and Americans United for Life want to mandate more detailed reports.

[...]  As is the case with funding for crisis pregnancy centers and legislation about ‘prenatal counseling’ or ‘perinatal hospice care’, Republicans are advancing abortion reporting mandates under the guise of protecting women. And in a moment when voters are furious over abortion bans, anti-choice lawmakers and organizations very much need Americans to believe that lie. We have to make clear that state GOPs aren’t just banning abortion, but enacting any and every punitive policy that they can—especially those that strip us of our medical privacy. After all, it was less than a year ago that 19 Republican Attorneys General wanted the ability to investigate the out-of-state medical records of abortion patients. Did we really think they were going to stop there?

@jessicavalenti writes a solid column in her Abortion, Every Day blog that the GOP's agenda to erode patient privacy of those seeking abortions is a dangerous one.

[cesium-sheep]

seeing someone mention on a video about tsa bullshit for trans people that like "prosthetics and assistive devices can get flagged too" as just. an afterthought. the trans and disabled communities could have so much in common but ostensibly-able-bodied trans people are terrified to be associated with us even if they're mental health advocates. it's fuckin sad.

[commiepinkofag]

U.S. Marshalls Spied on Abortion Protesters Using DATAMINR >

Twitter’s “official partner” monitored the precise time and location of post-Roe demonstrations, internal emails show.

DATAMINR, AN “OFFICIAL PARTNER” of Twitter, alerted a federal law enforcement agency to pro-abortion protests and rallies in the wake of the reversal of Roe v. Wade, according to documents obtained by The Intercept through a Freedom of Information Act request.

Internal emails show that the U.S. Marshals Service received regular alerts from Dataminr, a company that persistently monitors social media for corporate and government clients, about the precise time and location of both ongoing and planned abortion rights demonstrations. The emails show that Dataminr flagged the social media posts of protest organizers, participants, and bystanders, and leveraged Dataminr’s privileged access to the so-called firehose of unrestricted Twitter data to monitor constitutionally protected speech.

[Sam Biddle, The Intercept, May 15 2023]

[imwritesometimes]

It's becoming just.... blatantly obvious that all this GOP posturing on transgender individuals being about ~protecting women's rights~ is just them trying to save face after they got Roe overturned and that has since backfired massively for them. Like it's so clear they think this is somehow gonna win points with women 'see we really care abt ur rights! We're trying to protect you!' while they still try to pry those rights from our hands not to mention there's no danger cis women face from trans people anyway