Dell Medical School and the Future of Care

In 2009, along with several physicians, patients and health activists, I helped form the Society for Participatory Medicine, a nonprofit promoting “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.” I was drawn into discussions about the transformation of healthcare by the late Dr. Tom Ferguson, whom I met at a 1980s meeting of the Austin Writer’s League, where he was presenting about his publication, Medical Self-Care.

Tom was a physician, with degrees in Creative Writing, and medical editor of CoEvolution Quarterly, a descendant of the Whole Earth Review and the one periodical I read cover to cover.

The next time Tom and I met, around 1992, I was an early evangelist for the Internet, and forward-thinking Tom could see how access to the global network could empower patients to be more actively involved in their own treatment, and in the cultivation of knowledge about diverse health conditions.

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Most Recent

Participatory Personalized Medicine in Action: Pharmacogenomics in Primary Care

This is a post by SPM Board Member John Hoben – Business Development Director at Bio-Optronics. Hoben’s passion is reconfiguring medical industrial complex assets and transactions from sickness response to true preventive delivery. This entails focusing on realizing improved health status for populations through unique, individualized approaches.


A funny thing happened on my recent annual primary care physician visit.  After selecting a pharmacogenomics (PGx) testing service last year (see The Participatory Approach to Personalized Medicine article for background), I printed the results and brought them along to share with my doctor.  A student happened to be shadowing my physician that day.  When I told them both about my PGx results and shared the summary sheet, they were both refreshingly intrigued to see the results.

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Diabetes patient leaders: apply by 2/15 for fully funded #MasterLab Leadership Institute

Now THIS is what we call #PatientsIncluded. Twenty patient leaders will be fully funded to attend a new “MasterLab Leadership Institute” in the San Francisco bay area March 31-April 2. Click here (or the graphic above) to learn more and apply by next Wednesday, Feb 15.

(They’ve been promoting it for weeks – this post is a late addition.)

From their event flyer: read more…

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Precision Medicine For Me (a new open collaboration) launches at #PMWC17

Today at 3 pm ET, at the Precision Medicine World Conference  #PMWC17 in Silicon Valley, a new open collaboration called Precision Medicine For Me was announced, to help patients and clinicians everywhere make the most of the potential of precision medicine. Our Society for Participatory Medicine is an enthusiastic supporter.

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Apply by 1/23: PCORI grant to fund e-patients at palliative care summit!

Patients Included badge with TMIntro note by e-Patient Dave: What a great development!  CCCC is an organizational member of our Society, and last year we blogged CCCC conference announces inaugural class of palliative care e-patients, and now, even better news: e-patient participation is getting formal support through a PCORI grant!

I spoke at last year’s event, and as I said in my post about it, “Palliative care is not a synonym for hospice or end of life. It’s about making life with a disease more comfortable, which can be combined with curative care.”

Here’s the start of CCCC’s post about the scholarships – visit their whole post for full details. Congratulations to CCCC and especially to SPM member Liz Salmi for earning this PCORI grant!
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History lesson! “LINC with Tomorrow”: Warner Slack on “educational TV,” 1967

The much-quoted line “Patients are the most under-used resource in healthcare” was first uttered in the 1970s by Warner Slack, MD, when he was a young doctor in Madison, Wisconsin. It’s seen many versions and incarnations since then, but it all started with Dr. Slack’s feeling that patients could help a lot by directly entering the basics of their medical history directly into the computer.

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Person-Centered #CarePlanning – What data?

Last month, in Communicate What? #CarePlanning, I declared the #CarePlanning hashtag, and told from personal experience the importance of communication in enabling participatory care. I ended with this – my perspective as the person who has the problem and the only person who is always there at the point of care:

I have goals and a plan. I monitor and communicate it.  I’m the connector for my team of more than a dozen. This is person-centered #CarePlanning.

The Tower of Babel (Wikipedia - Peter Brueghel the Elder)

The Tower of Babel (Wikipedia – Peter Brueghel the Elder)

Our health teams struggle to communicate at transitions (between team members, when adding a new team member, between people, offices, and settings) – it’s a perfect tower of Babel.

In its simplest form, communication is who, what and how.  Who needs to communicate? What do they need to communicate? How will they communicate?

#CarePlanning focuses on the what. What are the goals of the person on the health journey? Who’s going to do stuff to get there? When? How will these goals and activities be tracked and shared across time and settings?

Let’s engage to better understand #CarePlanning from the point-of view of the person (mostly as patient, sometimes not; usually including family and/or caregiver), rather than from the point-of-view of the doctor, the hospital, or the insurer. What does the person want to accomplish, who on their team (including the person) is going to do what? by when?

Let’s also narrow our focus to #CarePlanning that can be communicated during transitions between settings rather than within settings (For example,  between home and clinician office, between hospital and rehab center, between home and work or school. Not within the home, hospital, clinic, or agency). read more…


The S’mores Circle

8b8836e5c2cab9312ec1509e5b774f11This time of the year is often filled with reflection and a retrospective review of our lives with a focus on lifestyle changes we hope to attain in the New Year. It’s a time where regrets can be erased by future aspirations. Many of us set resolutions, which I stopped doing years ago, but as I conducted a 2016 “life audit” (red pen and all), I recognized that I failed to practice what I preach to others daily.

When we contemplate healthy habits, we often focus on exercise and nutrition, but we often lose sight of friendships and its correlation to health and wellness. A strong connection with others can strengthen our immunity, improve our emotional and physical well-being, and help us recover from the ups and downs of life.

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Communicate What? #CarePlanning

danny-vl-houseI want to share a family story and show how it connects to something we’ll all face, where real participatory thinking – and communication – make all the difference.

My wife and I built a house together – the whole house, everything except drilling the well. While building, living in it and improving it over 5-6 years, we had a running argument about paneling. She hated it and I loved it. It took us several years to figure out that she hated 4×8 sheets of paneling and I loved real wood paneling.  Turns out that we agreed. We had different images associated with paneling. Communication is a bitch in the best of circumstances.

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Thanksgiving Letter to my Doctor

Coming from Romania 15 years ago, Thanksgiving was not a big thing for me. I didn’t quite grasp the holiday. My husband cooked and celebrated, and I helped and observed it in a detached way.

11 years ago, it was the Wednesday before Thanksgiving. I was 22 weeks pregnant; I was waiting for a test result. Earlier that day, I called the MFM group that ran the test, but they had left for the holiday and did not return my message. It was a big threshold for me because a few years back this test came out very bad at that point in my prior pregnancy. Back then, I did not learn about the test results for two weeks, and I ended up very sick and lost my baby.

It was almost getting dark, around 4:30 PM. I was resigned not to learn about the test result until Monday. I was still pleasantly content as I just brought over my parents from the airport. It was the first time they were visiting. I remember that moment the way we all remember where we were and what we did just before September 11.

The phone rang, and you were on the phone. You told me the test came up fine. You wished me Happy Thanksgiving and hung up. Everything changed. I had a reason for being thankful for kindness and selflessness. That’s what Thanksgiving is!

It feels like a small gesture, and I know it wasn’t. It wasn’t because it probably wasn’t just me, it was a list of worried patients that were waiting for answers. It wasn’t your responsibility; it was someone else’s test and problem. Like everyone else in the US, you probably had other things to do on Thanksgiving Eve’s afternoon, and you still took the time to make that call.

Happy Thanksgiving!





A first: Participatory Medicine thinking in the Harvard Business Review

hbr-patient-engagement-clipAs kindlers and promoters of a social movement, our Society for Participatory Medicine keeps a keen eye out for signs of traction in credible places for what we’ve been advocating since 2009:

Participatory Medicine is a model of cooperative health care that seeks to achieve active involvement by patients, professionals, caregivers, and others across the continuum of care on all issues related to an individual’s health. 

We’ve evangelized in this blog, our journal, numerous health policy meetings and hundreds of medical conferences. Our thinking has had lots of media coverage in healthcare-related publications, but this is a first: a new high-profile article in the Harvard Business Review, Giving Patients an Active Role in Their Health Care.

Here are a few quotes, including the highlights in this graphic:
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