On Twitter @HCI_GPerna just posted that the Dept of Health & Human Services has announced the long-awaited rule changes to HIPAA, the Health Insurance Portability and Accountability Act of 1996. These are the changes to implement HITECH, the 2009 stimulus bill that brought us the EMR incentives and Meaningful Use.

Next week the changes will be officially published on this Federal Register page. Until then, a pre-publication PDF is available on that page. (563 pages, and that’s just for the changes!)

I don’t have a clue yet what the changes are – just shooting this notice out fast. Some coverage:

• Healthcare Informatics
• AHIMA (American Health Information Management Association)

The commentary I’m most eagerly awaiting is from Deven McGraw of the Center for Democracy and Technology, widely regarded as one of the few (if not the only) truly authoritative source on what HIPAA’s existing regulations do and don’t say.

HIPAA is mostly not what people think.

HIPAA is widely misunderstood, and that’s important, because it’s commonly cited as a reason why a hospital can’t give you your own information. Most people don’t even know what HIPAA stands for, and many can’t even spell it right – they spell it HIPPA.

For a very brief introduction, see this post on my personal site, featuring a Seinfeld clip where Elaine tries to see her chart. (She’d been marked “difficult.”)

More news as it happens.

It’s less common today but people used to think empowered patients were anti-doctor. One part of our response on this blog was to point out the many clinicians who are e-patients themselves, as in Let’s hear it for the d-patient e-patients (with dozens of comments).

This guest post by SPM member Leana Wen, MD (Twitter: @DrLeanaWen) is another, about her book released this week, When Doctors Don’t Listen: How to Avoid Misdiagnoses and Unnecessary Tests. Her words illustrate that participatory medicine is about patients playing an active role, in partnership with their clinicians – including when the patient is a clinician. She’s turned her family experience and clinical experience into a list of six tips. (Check out the advice to interrupt!) (But also to be respectful.)
___________ 

Have you ever gone to the doctor and felt like she wasn’t listening to you? Have you tried to tell your story, only to have him interrupt with a checklist of questions: do you have chest pain, shortness of breath, fevers, cough, and so forth? Have you ever felt ignored, and left thinking that your doctor never understood why came to him in the first place?

As an emergency physician, I have seen patients who are increasingly frustrated at their lack of control over their healthcare. As a caregiver, I have experienced the consequences of this firsthand.

My mother, Sandy, was a school psychologist in Los Angeles. When I was in my second year of medical school, she began complaining of a cough and feeling run down. Her doctors reassured her for six months that she had a virus. They blamed it on her being around kids all the time—but she’d never been sick like this before. And she was getting pains throughout her body—she knew it wasn’t right. It wasn’t until nearly a year later that she was found to have breast cancer that was widely metastatic. She was 48.

Survey data is a snapshot of a population, a moment captured in numbers, like vital signs: height, weight, temperature, blood pressure, etc. People build trend lines and watch for changes, shifting strategies as they make educated guesses about what’s going on. What’s holding steady? What’s spiking? What’s on the decline?

Just as a thermometer makes no judgment, the Pew Research Center provides data about the changing world around us. We don’t advocate for outcomes or recommend policies. Rather, we provide an updated record so that others can make those pronouncements and recommendations based on facts.

The latest in our health research series is being released today. Health Online 2013 finds that internet access and interest in online health resources are holding steady in the U.S. For a quick overview, read on…

The Health IT Policy Committee of the Office of the National Coordinator of Health IT released its proposed Stage 3 objectives for Meaningful Use.  ”Eligible Providers” that meet these objectives share in the federal electronic health record incentive program under the HITECH Act.  (Learn more at HealthIT.gov; here’s some more background on the Stage 1 Meaningful Use regs.)

The Committee wrote that it saw the release of these draft objectives as an opportunity “to begin to transition from a setting-specific focus to a collaborative, patient- and family-centric approach.”

The Society for Participatory Medicine filed comments on the draft Meaningful Use  Stage 3 objectives (PDF), saying: “We endorse the proposals that further this goal, and offer some focused recommendations intended to ensure that the final regulations are in fact designed to help achieve this goal.”

The report was issued overnight – see Susannah’s post here about it, media coverage (via Google), and blogs.

I’m stealing some Susannah Fox thunder here because I can’t wait, and you should carve out a spot in your calendar tomorrow. Here’s her tweet just now:

New @pewinternet health data tomorrow! 7am ET = full report on pewinternet.org and my blog post on e-patients.net - can’t wait!

Pew data is always big news. The movement we cover on this blog – engaged patients, doctor-patient partnerships, online patients and communities – has constantly been beset with rumors, blind guesses, and uninformed speculation about who’s doing what and what it means. One once-over-lightly PR firm talks about engaged online patients as “cyberchondriacs,” an ignorant term that connotes imaginary illness; some observers hear stories good and bad outcomes and guess at inferences, which is reasonable if you don’t have data.

And that’s where Pew Research comes in. They have a strict policy of only reporting the facts, not speculating on what it all means. (Susannah refers to herself as an “internet geologist” – “I count the rocks.”)

If you’ve heard important reality metrics like

• 85% of U.S. adults use the internet
• 80% of internet users look online for health information
• 31% of cell phone owners, and 52% of smartphone owners, have used their phone to look up health or medical information

… or the term “peer to peer healthcare,” know that they’re Pew data, all summarized for quick reference in Susannah’s “tip sheet” at http://bit.ly/PewHealthTips, including trends over time.

Evangelists like me add commentary to make our case, for instance: “Look, everyone’s doing it – we can’t stop it, so we should get with the program and help people improve their skills.” That’s our role; Pew just delivers the facts. Pay attention.:)

This is our monthly introduction to e-Patients.net, blog of the Society for Participatory Medicine. Follow the Society on Twitter (@S4PM), Facebook, and LinkedIn.  Here’s how to become a Society member, individual or corporate.

Our publications:

• This blog is e-patients.net. Subscribe via RSS or email, tweets etc.
• Our open-access journal is the Journal of Participatory Medicine (Twitter: @JourPM)

“Participatory Medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.”

Additional resources:

Correction Monday morning: the project is called the Reproducibility Initiative, not Project. Also, note that we got a comment from co-founder Elizabeth Iorns – discuss!

I happened to catch friend Ivan Oransky of RetractionWatch on NPR’s Science Friday last week, and caught an item that excites me because it could strengthen one of the pillars of medicine: scientific evidence. Would you believe that most published research is never re-tested by an independent lab?? Ivan talked about a new initiative to fix that, the Reproducibility Initiative, reported in August on Slate:

Precious research money is wasted on unreal results, but we can change the culture of science.

I’m a little embarrassed that we didn’t hear about this project until now, because we’re repeatedly covered this issue, and it’s never been good news. (I’ll paste in a list at bottom.)  In short, consider that your doctors – or you, if you’re a clinician – are taught to stick to the evidence. Yet:

• December 2010, New Yorker: “The Truth Wears Off“: If you took science classes in high school or younger it’ll gross you out, as it did me: we were taught that when another person repeats your experiment they dang well better get the same result, but most medical research is never tested again by a different researcher.
• A TED talk and TEDMED talk by Ben Goldacre MD explain that even when some studies are done by multiple labs, often some of the data goes missing.

Susan Woods responded to my previous post, PCORI and Just-In Time Decisions with the research funding system doesn’t really work for anyone. It is in concrete, Agreed.  Micro Contracts could be a small intervention that could help move the dial. (As a reminder, the Boston contingent of PCORI ambassadors, including S4PM member, Ken Farbstein, made three recommendations to the PCORI Board.) This is a report on the second recommendation.

Patient-driven, patient-centric research opportunities are less likely to be prepared to submit high scoring proposals than traditional research teams.

Jan. 3 update: See important update at bottom – the site owner has identified himself.

I’m extremely troubled by this development, so much so I’m stopping a tight-deadline task to write this. Let’s hope that as things unfold this will resolve.

Ivan Oransky, executive editor of Reuters Health, and Adam Marcus run the Retraction Watch blog, which we’ve covered here occasionally.  It’s a side hobby project for them, “Tracking retractions as a window into the scientific process,” as they put it.

This is immensely important for anyone who wants understand the available evidence that’s used in (duh) evidence-based medicine. The scientific process, especially peer review, is quite vulnerable to simple human errors, not to mention outright baloney such as fabricated data. Does this matter to the world? Hell yes – the whole anti-vaccine furor arose because of fraudulent data.

And does it matter to e-patients? Hell yes, because every time a clinician rolls his or her eyes at a patient who’s questioning evidence, it’s a setback for our shared efforts to improve the effectiveness of health and care … efforts to “let patients help,” as the saying goes.

Well, today Retraction Watch published Facing legal threats, Science Fraud temporarily suspends posting.