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“Health cometh not from healthcare”

We often say here that clinicians should welcome activated patients. Hand in glove with that, we must also say: Yo, patients: get activated! Know what works, and act on it!

Huzzah to Swedish SPM member and Parkinson’s patient Sara Riggare for this, on Facebook, which she got from SPM member Mighty Casey. (Notice a pattern?) It’s by John Mandrola MD, “a cardiac electrophysiologist practicing in Louisville KY. I am also a husband to a palliative care doctor, a father, a bike racer, and a regular columnist at | Medscape.”

A snip from the blog post:

Nary a day goes by that I don’t see an example of how good-intentioned active management of a patient causes problems. (BTW: My son, a grammar prescriptivist, says I shouldn’t use that word, nary.) Emergency rooms overflow with elderly patients who have fallen because of BP goals. Last week, I saw a patient admitted (for confusion) with dangerously low sodium levels because of high BP treatment. It’s the same story with aggressive blood sugar control, statins in the elderly, NSAIDs, and we have already discussed the limits of screening for disease. The good-intentioned-but-harmful-treatment list is a long one.

The success of managing chronic disease does not turn on doctors or nurses. It turns on the patient and his or her choices. One of the wisest doctors in my hospital once gave me unforgettable advice: he said doctors don’t control outcomes.

Note: the above words come from a post that says that this shows why the PCMH concept (patient centered medical home) can’t work, because it gives patients more frequent management.  I don’t know enough about the details of PCMH regulations; in my limited knowledge, the GOAL of PCMH is to give patients a “home” as in Cheers, “where everybody knows your name,” as opposed to a stream of providers you’ve never seen before.  My comments here are limited to what I said above, not about the PCMH concept.

My impression (half-informed at best) is that if patients are suffering those consequences as a result of doctors’ instructions, then the doctors were getting it wrong. THAT would be the problem – along with, I’d bet, insufficient instruction to the family on what to watch out for. But as I say, I’m just pointing to the paragraphs above. Delivering lots of medications and instructions is not a sure path to health.


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Rare Diseases: Powered by Patients

Rare Disease DayA guest post by Wendy White of Siren Interactive in honor of Rare Disease Day:

Can empowered patients drive change in healthcare? Take a look at the progress that has been made in the rare disease community over the last 30 years—much of it spearheaded by patients and caregivers–and I think you’ll agree that the answer is definitely, “Yes!”

In the decade before the Orphan Drug Act was approved in 1983, only 10 new products for rare diseases had been developed by the pharmaceutical industry. Since then, there have been more than 400 drugs and biological products developed for rare diseases.

But there is still much that remains to be done, especially in the area of diagnosis, which is a challenging task for physicians who seldom see rare diseases in their practice. In the first study, conducted by the National Commission on Orphan Diseases in 1989, more than 1/3 of patients reported that it took 5 years to receive an accurate diagnosis after the onset of symptoms. Over twenty years later, the Shire Rare Disease Impact Report found it took an average of 7.6 years to receive an accurate diagnosis in the US—with 2-3 misdiagnoses along the way resulting in inappropriate or delayed treatment.

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JAMA, patient centered medical homes, and the ongoing cost/quality conundrum

Today – February 26, 2014 – the Journal of the American Medical Association (JAMA) published the results of a pilot study (note: click the link, and then click the JAMA Reader link button on the right side of the page for the full text) of a volunteer group of Pennsylvania primary care practices. The pilot was designed by a coalition of payers, clinicians, and healthcare delivery systems in the southeastern region of Pennsylvania, and its purpose was to measure the impact, if any, of the patient centered medical home (PCMH) model on outcome/quality improvement and cost containment.

I’ll cut to the chase: the first paragraph of the conclusion states

A multi-payer medical home pilot [...] was associated with limited improvements in quality and was not associated with reductions in utilization of hospital, emergency department, or ambulatory care services or total costs over three years. These findings suggest that medical home interventions may need further refinement.

Further along in the conclusion section, the article refers to the patient-centered medical home as “professional associations, payers, policy makers, and other stakeholders, [in a] a team-based model of primary care practice intended to improve the quality, efficiency, and patient experience of care.” The only trouble with this definition of PCMH is that the patient is not really a part of the team – patients are once again assigned acted-upon rather than actor-in status in the healthcare transaction.

In a highly-readable post on his blog, Dr. John Mandrola boils his observation of the JAMA report down to “health cometh not from healthcare.”

Until the leaders in clinical practice – JAMA and all others in the position to ignite and guide the conversation about medical care, its purpose, and its future – fully recognize the need for a participatory model that starts and ends with the patient, we’ll be reading study reports like the one in today’s JAMA.

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Emory study: “PHR resulted in significantly improved quality of care and use of services”

Long-time readers will recall a hallway conversation I had at a conference in 2011 with Silke von Esenwein PhD of Emory University’s Center for Behavioral Health Policy Studies, who was presenting a poster with preliminary results of a study in process. The post was titled Safety net populations do benefit from online PHRs, and included the poster PDF and video of that conversation.

As the post noted, this was a significantly challenging population, with features I’ve often seen cited as reasons “patients can’t be trusted as capable partners”: these patients were poor (at a safety net provider), had a mental health problem, and had a chronic comorbidity. In this population an especially important part of “patient engagement” is coming in to use the services available to them.

The final paper was published recently in Psychiatry Online, and showed the opposite of that expectation: even with all those challenges, patients who were offered access to a PHR became significantly more engaged than those given “usual care.” Here’s a bullet-ized reprint of the conclusions:

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Crowdsourcing Curriculum on Consumer Health Informatics

What do you think should be included in a course in Consumer Health Informatics (CHI)  in a graduate medical informatics program?

I know a graduate curriculum begging for input from the most engaged and empowered consumers, patient advocates, and technology and health professionals – passionate about participatory medicine.

As faculty Oregon Health Science University, Department of Medical Informatics & Clinical Epidemiology, I’ve been asked to teach the CHI course. The class was developed by Holly Jimison, now at Northeastern University. Offered online this spring to graduate students in the Schools of Medicine and Nursing, it will be taken primarily by students getting a masters or doctorate in medical informatics. Students access lectures and other materials online through Sakai, participate in online forums and submit papers and presentations over a 12 week period.

Consumer informatics changes rapidly, so it’s challenging to stay up-to-date (like computers, it can get stale as soon as it walks out the door).  I’ve been editing course content and updating lectures, but all during this process I thought == how can I get the voice of consumers and advocates in the curriculum?  Answer: ask them!

What would you include in Consumer Health Informatics graduate curriculum?

Here’s a description of the class, and list of topics.  Feel free to comment about key areas of interest and less important topics, great content that you’re aware of – slides, videos, TedX talks, whatever. Of course if you really have something to say, contact me directly at – guest speakers welcome!

It would be great to start a discussion == I’ll make sure this  DISCUSSION is part of the students’ exercise! :-)

Description: This course focuses on the intersection between consumers, information technologies and health care. CHIT explores the design, use and impact of emerging technologies that aim to engage consumers to participate in their health and health care. We review trends, opportunities and challenges in consumer-facing health IT, taking the perspective of various stakeholders in particular consumers, patients & caregivers.

Draft Topics:

  1. Overview of Consumer Health Informatics
  2. Empowered consumers & ePatients (Tom Ferguson & SPM)
  3. Trends in consumer technology and health IT
  4. Quality of Health Information, information search
  5. Barriers to access; literacy & eLiteracy and learning styles
  6. Chronic conditions; disability
  7. User Design; Vocabulary; Pubic Reporting; Data visualization
  8. Personal health information, privacy & security
  9. Personal health records & portals, eHealth tools
  10. Health Information Exchange
  11. Patient-Clinician Communication; OpenNotes & Blue Button
  12. Ethics; Workflows; Patient Generated Data
  13. Caregivers; Peer to Peer Support
  14. mobile Health; Quantified self
  15. Research and systematic reviews; Consumer Meaningful Use
  16. Professionalism; Patient satisfaction


Hey Teacher, what’s in your wallet?

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Twitter Empowers Patients to Seek and to Speak Out

The ability to write something meaningful in140 characters, including a shortened URL, is the basis of Twitter. Over 500 million tweets go out every day to individuals who enjoy the simplicity, functional design, and speed of delivery that twitter offers, along with the ability to connect with others, collaborate and share ideas.  To say that Twitter is viral is to understate the facts.

Twitter launched in March, 2006,has become the go to place . By the fall of 2013, there were over a billion registered twitter users who generate more than 500 million tweets daily. Since its inception there have been over 50,000,000 healthcare tweets; over 5,000 comments, and there are more than 1,000 common healthcare hastags.

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French Wikipedia now contains e-patient

Screen capture of French Wikipedia entryEdited an hour later – I had the wrong French speaking e-patient!

On Facebook today Christine Bienvenu @TinaBurger posted this news on my timeline:

… with the help of a Swiss colleague who works at the Geneva University Hospitals we were able to get the French definition of‪#‎epatient‬ onto the French Wikipedia. I was sick of not finding the definition in French and so decided that it was time to fix that. Seeing as I’m in the middle of translating Let Patients Help, I used that as inspiration to create the definition.

At first it was put up for removal as some of the Wikipedia moderators who obviously don’t “get it” declared that it was a buzzword-trend concept and not an actual scientific term. But we were able to argument it’s legitimacy with definitions, references and external links to show just how seriously it is considered in the medical world. I then sollicitated the help of my influencial epatient friends in France and others in the twittosphere to vote for keeping the definition on Wikipedia. And it has just been officially accepted onto Wikipedia! 

Congratulations, Christine, and thank you!

To visit the listing click the graphic or here.

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Patients to Have Right to Access Lab Test Result Data – Finally!

The lab test result data access rule is finally final. See the HHS presser and the final rule, which is scheduled to be published on Thursday.

What does this mean? In a nutshell, patients in all 50 states are now guaranteed the right to access the results of tests conducted by freestanding labs. (The right to test results from labs within hospitals, other health care facilities and physician offices has already been in place under HIPAA, and a handful of states have already guaranteed direct patient access to freestanding lab test results.) The compliance date for the rule is eight months out, in early October, in order to give labs time to put necessary processes into place.

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TMIT, Dr. Chuck Denham, and Patient Safety’s First Scandal?

For e-patients and others who list themselves on Texas Medical Institute of Technology‘s SpeakerLink, this very meaty post by Society of Hospital Medicine founder and world-renowned leader of the hospitalist movement Dr. Bob Wachter is required reading. After which, you will likely do some required thinking.

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A short capture of the post’s purpose: Dr. Chuck Denham, founder of TMIT and the former head of the National Quality Forum‘s Safe Practices committee, has been accused of some very suspicious business practices. We’ll leave it up to you to decide whether or not to continue to list yourself on SpeakerLink. This might be the time to see about either asking TMIT to let SPM take over managing Speakerlink, or for SPM to build its own speaker portfolio platform.

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Monthly introduction to

This is our monthly introduction to, 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:

“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:

Contact us:


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