Participation in Science, too – at the Denver Museum of Nature and Science

It’s an often repeated refrain in my life : “I’m not that smart, my ideas are not unique, if someone is doing something better than I, I’d like to know about it.”

Luckily there are people like Steve Krizman (@SteveKrizman) , Diane Gage-Lofgren (@dianelofgren) and really a community of curious people who have the same philosophy. With that in mind, Steve and Diane brought us (myself, Keith Montgomery, Karen Blair) to the Denver Museum of Nature and Science (@DenverMuseumNS) to see the Expedition Health exhibit there , which also happens to be supported by Kaiser Permanente’s Community Benefit.

Expedition Health has won major awards for Visitor Experience. What better place to learn about experience outside of health care, then. We were guided on our tour by a most impressive scientist, Nicole Garneau, PhD who has an accessible twitter alter-ego in @YoPearlSciGirl . Nicole is actually the Curator and Department Chair in Health Sciences, and she has what I have been calling lately, a very high humility/high accomplishment ratio. She’s passionate about science and about citizen participation in science. Let me understate things a bit and say that she’s an off-the-charts role model for women in science, and science in general.

I had heard about participation in medicine / health care (of course), but not in science. Nicole is a grant funded researcher and operates The Genetics Lab, which is

the first community-based and community-run genetics lab in the country

They are serious about participation here, and not just for participation sake. In The Genetics Lab, they are working together, as a community, to unlock the science of taste. If you have an interest in health and obesity prevention, it doesn’t take long for you to venture into the science of taste. To see that some of that science is being generated here by people who feel involved in the answer is a great thing. 

As Nicole explained to us, the exhibit is tuned for involvement, and in promoting a person’s body in the positive. As I did a little research for this blog post, I found some information on Participatory Mueums and Participatory Science Centres. As I live in a city with a lot of museums, I have noticed this type of design more and more, and I didn’t realize how much I could learn from it until I saw it a little behind the scenes.

The other often repeated refrain for me is “as usual, I saw lots of analogies to clinical medicine.” The reason we are on this quest, by the way, is because we want to know what supports the people we serve in experiencing a healthy future for themselves, their communities, and society. The right experience allows the people we serve to leverage excellent medical care to achieve their life goals, and if health care has the ability to contribute to creating that, it should. With a national budget of $2.7 trillion dollars, I don’t think this is an unreasonable expectation. Fortunately, there are so many people and institutions paving the way.

Thanks again Nicole, Steve, Diane, Karen, Keith, Kaiser Permanente Colorado, and the Denver Museum of Nature and Science for embracing curiosity and inspiring a whole community to learn and teach about better health! More photos below, enjoy.

Journal of Participatory Medicine is launching!

From e-Patient Dave (ps. I love the part about not spending to put this on Businesswire)

Here’s the announcement of the Journal of Participatory Medicine, which will be formally launched Thursday at the Connected Health conference in Boston, as described herein.

We’re not spending to put this on BusinessWIre etc – all we care about reaching are people who’ll understand the significance. And that includes you.

Similarly, the length is not standard press release, nor is the content; we wrote for those interested parties, knowing they’ll read as much as they want. We took the time we needed to spell out what we feel is the significance of this event.

Thank you so much for your long-standing support of this cause.

Feel free to share.

For immediate release

October 21, 2009

Improving health care:
Journal of Participatory Medicine will document methods that work
for patient/provider collaboration

Launch at Connected Health Symposium
features essays by visionaries in
health care, Internet, high tech, business, and sociology

Patient engagement and patient empowerment are popular topics, with hundreds of thousands of Google hits, but there’s precious little information on how to do them well. A new academic journal being launched this week, the Journal of Participatory Medicine, aims to change that.

Created by experienced pioneers of the “e-patient” movement, the Journal will be introduced this week at the Connected Health Symposium in Boston, hosted by the Partners HealthCare Center for Connected Health. The Journal is an official publication of the Society for Participatory Medicine, founded in 2009 by the patients and physicians who have worked together for several years at

“Because health professionals can’t do it alone”

Participatory Medicine is a new approach that encourages and expects active patient involvement in all aspects of care. It builds on the work documented at the blog, whose slogan is “Because health professionals can’t do it alone.” The group’s landmark 2007 paper “E-Patients: How They Can Help Us Heal Healthcare” tells many stories of engaged, empowered e-patients who substantially improved their own outcome and the outcomes of others by supplementing or even going beyond what their physicians alone could do.

That paper and subsequent blog posts have further documented the stresses and information overload faced by physicians today, and flaws in today’s care delivery system and personal health data, including many anecdotes of patients who made a pivotal difference through active engagement. Now, the Journal of Participatory Medicine will move the field from anecdote to science, with articles on principles, methods and evidence-based outcomes.

Authoritative and accessible; peer-reviewed by patients and health care professionals

The Journal will be written and peer-reviewed by and for all stakeholders: patients, healthcare providers, caregivers, researchers, payers and policymakers. Physicians who have practiced in the participatory model report greater satisfaction when they work with patients who are actively engaged. Similarly, participatory patients say they feel empowered, heard, and more in control.

Free continuous updates online

The Journal will publish continuously and will be freely accessible to the public at Following the inaugural issue in early 2010, articles will be published as they are reviewed, accepted, and edited; there may also be single topic special issues. Email alerts will inform subscribers when new material has been posted. Anyone can sign up to receive these alerts at

Available online now is a collection of invited essays that serve as the “launch pad” from which the journal will grow. In their opening editorial “Why the Journal?” the editors write, “We consider this introductory issue an invitation for you to join us as we create a robust journal that will serve a growing community of concerned individuals and professionals.”

Mission: To transform the culture of medicine

The Journal’s mission is to transform the culture of medicine by providing an evidence base for participatory health and medicine. It aims to advance both science and practice, focusing on six content areas: research articles, editorials, narratives, case reports, reviews, and updates on related research in other media. It will explore how participation affects outcomes, resources, and relationships in healthcare; which interventions increase participation; and the types of evidence that provide the most reliable answers.

Importance of a broad-based peer review process

The Journal uses a new, broad-based peer review process to significantly improve on traditional academic journals. While still managed by experienced journal editors, JoPM’s peer review process will be open to a far broader set of minds for scrutiny of methods and analysis. Improved accuracy and effectiveness are vital as the population ages and healthcare costs continue to rise.

In the first issue of JoPM, Richard Smith MD, editor of the prestigious British Medical Journal for 25 years, writes that “most of what appears in peer reviewed journals is scientifically weak.” This echoes the words of Marcia Angell MD in The New York Review of Books, who wrote in January “It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor of The New England Journal of Medicine.” Considering the pivotal role that journals play in policy and treatment decisions, JoPM’s broad-based process aims to improve the reliability of the process and the resulting research.

Bringing thought leadership from many disciplines to healthcare

Because of the complexity and size of the healthcare challenge, the Journal of Participatory Medicine invites participation from all disciplines that can help.

Leadership of the Journal and the Society is shared between physicians and laypeople.

· Co-Editors are Jessie Gruman, PhD, Founder and President of the Center for Advancing Health, and author of AfterSchock: What to Do When the Doctor Gives You—or Someone You Love—a Devastating Diagnosis; and Charles W. Smith, MD, Executive Associate Dean for Clinical Affairs and Professor of Family and Community Medicine, University of Arkansas for Medical Sciences, and Founder of eDocAmerica.

· Deputy Editor is Alan Greene, MD, Founding President of the Society, Co-founder of, Clinical Professor at Stanford University and Chief of Future Health at A.D.A.M., Inc.

· Managing Editor is Sarah Greene, publishing and new media entrepreneur with three startups in science, health, and medicine acquired by Wiley, Elsevier, and Thomson Healthcare.

· Founding Co-Chairs of the Society are Daniel Z. Sands MD, MPH of Cisco Systems and Beth Israel Deaconess Medical Center, and his patient “e‑Patient Dave” deBronkart, of and TimeTrade Appointment Systems.

Some of the articles featured in the first issue:

· Investor and futurist Esther Dyson on “Why in the world ‘participatory medicine’?”

· Longtime JAMA editor George Lundberg MD and former AARP board chair Joanne Disch PhD, RN: “Why healthcare professionals should be interested in PM”

· Kate Lorig RN, Dr.P.H., Director of Stanford School of Medicine’s Patient Education Research Center: “Why people should be interested in PM,”

· David Lansky, CEO of Pacific Business Group on Health and former Senior Director at the Markle Foundation, on “Why payers should be interested in PM”

· Kurt Stange MD, PhD, Case Western Reserve University and editor of the Annals of Family Medicine, and Gilles Frydman, founder of the network of cancer communities, on “Building an interdisciplinary field of inquiry and practice”

· Richard Smith MD, former editor of BMJ, and Musa Mayer, famed breast cancer activist, on “The Value and Questions of Peer Review”

· and many more articles

Launch is the closing event at Connected Health Symposium

The official launch of the journal will occur on Thursday, October 22 at 3:30 PM as part of a panel discussion about the “Changing Role of the Patient in Health Care and the Changing Rules of the Game for a New Publication.”

Moderated by Co-editor Jessie Gruman, the panel will include Gilles Frydman, Founder and President of ACOR (Association of Cancer Online Resources) and Editorial Board Member; Dan Hoch, MD, PhD, Dept. of Neurology, Mass. General Hospital, Co-founder of Braintalk, and Editorial Board Member; Deputy Editor Alan Greene, MD, and Co-editor Charles W. Smith, MD.

The Society chose to launch its journal at the Connected Health Symposium because of the long and sustained commitment Partners HealthCare and the Center for Connected Health have had to exploring innovative and effective ways to deliver quality healthcare outside of traditional medical settings. According to Gilles Frydman “Many of the editorial advisers and board advisers for the journal have been working with the Center for Connected Health for years. We are delighted to be partnering with them for this launch.”

About the Society for Participatory Medicine

The Society for Participatory Medicine was founded in 2009 to learn about and promote PM through writing, speaking, social networking, and other channels. It builds on the work of Tom Ferguson, MD, who envisioned the e-patient movement within months of the birth of the Web browser.

Society membership is open to anyone who shares the belief that PM should be the operative model for healthcare, that all involved parties share in a collective decision-making process, and that the patient is central to that process. Through PM we can teach patients to take responsibility for their own health and providers to effectively invite patients into this.

About the Center for Connected Health and the Connected Health Symposium

The Center for Connected Health, a division of Partners HealthCare in Boston, develops innovative and effective solutions for delivering quality patient care outside of the traditional medical setting. The Center engages in pioneering research in a wide range of connected health-related areas and works to advance the field through its convening and publishing activities. The term “connected health” reflects the range of opportunities for technology-enabled care programs and the potential for new strategies in healthcare delivery. The Connected Health Symposium asks how information technology – cell phones, computers, the Internet and other tools – can help people manage chronic conditions, maintain health and wellness, and age with independence.

Journal of Participatory Medicine: or

Follow the journal on Twitter: @jourPM and #WhyPM

Society for Participatory Medicine: or

Connected Health Symposium:

Press contacts:

For the Journal of Participatory Medicine: Gilles Frydman, 212-300-5900

For the Society for Participatory Medicine: Cheryl Greene, 925-964-1793 Office;

925-639-5517 Cell;

Or email


Emphasis added to the last sentence. Participation makes things better.



Every notebook is handmade and it has been carefully checked for quality. If, despite our best efforts, we have overlooked a defect of any kind, please let us know. Send an e-mail to:, and include a digital photo that shows the problem you found, the quality control number (that identifies the notebook in your hands) shown here, along with the model name and your mailing address. We will send you a new notebook.
Together, we can prevent mistakes in the future. Thank you.

When physicians are ready to promote patient empowerment / engagement, what do we want them to do?

This question was posed to me by Ann Barber, MD, who I just spoke with. Ann reached out to me because she has been following the work of the group at, and specifically their call to recruit physicians to support the patient empowerment movement. Ann is an internist who specializes in hospital medicine, and has recently relocated to New York.

Ann asked me the question in the title of this post, and in talking with her, I decided to ask it here as well, because I’m unsure of the answer.

I wondered if this is because I/we have assumed that the majority of physicians are not interested in empowering patients, and therefore we don’t know how to support those that are?

I did a mini-check in with myself on this, and although I have alluded to some physician groups still feeling challenged by the idea of patient empowerment on this blog, the majority of my writing here points to the idea that physicians are very interested in empowering patients, because they want to perform well for them. The overwhelming majority of my posts here point to that idea, and here’s just one example.

Back to the question – where should a physician start when they have the energy and drive to make a difference in this area? When they interview for positions, what vocabulary should they use to describe what they are looking to do? How do they find the institutions in their communities that are already forging ahead in this area? If there are no institutions identified, how do they find the ones that are open to new ideas/thinking in this area?

My suggestion was to walk the hallways of any potential medical center employer and observe and ask questions – how are patients and families involved in their care? Do nurses and doctors round at the bedside (like they do at Medical College of Georgia, and hospitals in the Kaiser Permanente system [article in Harvard Business Review describes this] )? Are there visiting hours? How does the institution keep families and informed throughout a hospital stay?

I recommended a few resources, including the Wachter’s World Blog, written by hospitalist expert Bob Wachter, MD, the Institute for Family Centered Care, to find institutions in a community that are practicing patient and family centered care in New York, and of course, HelloHealth in Wlliamsburg.

I think the inpatient setting is the next frontier of patient and family involvement in their care, enabled by technology, and welcome the creativity of Ann and other hospital medicine specialists who want to make a difference for patients and famlies everywhere, which is why I wanted to think about this more.

Are there other ideas for Ann and the physicians in our profession who are among the “already recruited?”, in New York (and beyond)? Post them in the comments, please!

And thanks to e-patients and all the patients who have made it easy to remember who I am accountable to.

Always Just Testing : From PHRs to Participation

I started off a presentation-in-the-works to students in the University of Washington Executive MHA program, led by David Masuda, MD (who, sadly, doesn’t have a blog, just a Twitterfeed, it’s a journey…), with the words, “This is a beta test,” and I’m glad I did.

The beta test part is true, since I was asked by Carolyn Clancy, MD, from Agency for Healthcare Research and Quality to reprise and elaborate on a talk I gave at the American Board of Internal Medicine Forum in July for a seminar at AHRQ later this month. That was a 10 minute presentation, the one coming up is a little more full. The way I like to do these when the presentation is in evolution is practice to myself, of course, but also to test with a smart audience to read the feelings/emotions that are created (which is what I think a presentation is for – read more about this here) and see what ideas resonate well and which ones don’t. I usually tell the test audience that I’m testing, and it really helps, because it engages the discussion beyond the content, to how to make the content help other people after this group. Synergy.

Luckily, Dave and his co-students gave me the opportunity to do this.

Before it was my turn, I got to see Rick Rubin, President of Washington’s OneHealthPort in action, talking about community collaboration in the health information technology space. In my travels, I have seen that OneHealthPort is really a gem in the area of health information technology (when people find out about it). It’s company that supports collaboration among potential competitors who jointly have a business need for this collaboration. Whenever I mention that it exists on the East Coast, I have always gotten a good amount of interest in it (which I in turn forward on to the OneHealthPort folks).

I didn’t know before this day that Rick is from Boston, which probably accounts for some of my draw to his style. I think OneHealthPort should get more exposure nationally as a functional model for community collaboration and I reflected on the fact that doing business behind the Cascade Mountains in the Pacific Northwest sometimes shields the nation from some really good ideas. Place matters.

My turn – I worked to combine my work at Group Health with my work at California Healthcare Foundation, and beyond, with Participation as a theme, which is really where I have come to in terms of what I am about professionally. I think it went okay as a first run. I got great feedback from the students (all accomplished health professionals in their own right). I included some information about the 60 Minutes piece about Cedars Sinai and heparin. Luckily someone in the audience had first hand experience with this situation, and I need to adjust the presentation about this – it’s a reminder to be careful about telling other people’s stories, they know their stories better than I do (and vice versa).

One of the physicians in the class, who’s an Infectious Disease specialist, let me know that this approach to health care resonated with him as a physician supporting HIV patients, and how it was when his cohort of specialists began practicing a new way based on the needs of his patient population. I thought this was great to hear – I tell people that my cohort of physicians (Generation X) went through medical school during this time, and as a result we (I) graduated with the idea that I would work with patients who would know more than I would about their condition (which I embraced).

As far as the presentation I need to tighten it up more, and link every section to the concept of participation, and maybe a little leading on what should be done to foster it (study it in the leadership context among health providers? study it in the leadership context among patients guiding health systems? Going beyond studying participation of patients in their care). One of the parting commenters said to me, “It was very entertaining, it needs more substance,” and then, “you asked for feedback, so I wanted to give it to you.” I’ll take it, and since I’m now an East Coaster, directness really works.

I’ll wait to post the slides at the end of the month, so I can work up these ideas a little more.

Thanks again, Dave and University of Washington eMHA students for allowing me to continuously improve my continuous improvement!

Now Reading: A Few Peer-Reviewed Articles About Patient Willingness to Self-Monitor

Patients' experiences and opinions of home blood pressure measurement

Rickerby, J, and J Woodward. “Patients’ experiences and opinions of home blood pressure measurement.” J Hum Hypertens 17, no. 7 (0): 495-503.

Systematic Review of Home Telemonitoring for Chronic Diseases: The Evidence Base

Pare, Guy, Mirou Jaana, and Claude Sicotte. “Systematic Review of Home Telemonitoring for Chronic Diseases: The Evidence Base.” J Am Med Inform Assoc 14, no. 3 (May 1, 2007): 269-277

Comparison of acceptability of and preferences for different methods of measuring blood pressure in primary care

Little, Paul, Jane Barnett, Lucy Barnsley, Jean Marjoram, Alex Fitzgerald-Barron, and David Mant. “Comparison of acceptability of and preferences for different methods of measuring blood pressure in primary care.” BMJ 325, no. 7358 (August 3, 2002): 258-259.

Not pictured: Port, Kristjan, Kairit Palm, and Margus Viigimaa. “Daily usage and efficiency of remote home monitoring in hypertensive patients over a one-year period.” J Telemed Telecare 11, no. suppl_1 (July 1, 2005): 34-36.

There’s a potentially serious gap in the Connectivity for Californians initiative that we are addressing. Here’s a quote that illustrates it:

It is very clear from the interview data that patients have their own ideas, and spend a lot more time thinking about their BP than is apparent in the average 10-min consultation in general practice.

The gap is patient involvement in the design and planning of this initiative, or any healthcare initiative for that matter. Patients have many more ideas about what the problems are to be solved than can be gleaned even from articles like this – the articles simply show that the ideas are out there. Fortunately, we are committing ourselves to have a patient representative involved from the beginning, and that is coming together before any work is started.

The quote above is from the first paper by Rickerby, et. al (click on the images to the right to review any of the papers yourself), which described a qualitative study to look at a small number of patients’ attitudes toward monitoring their own blood pressure, in a practice that routinely recommends this.

The question (#1)

The reason I have reviewed these particular papers is because of the commonly posed question to me over the past several months, in the form of, “Ted, will/are patients really motivated to check their own blood pressure?” with the implication that they are not and they won’t. It’s a fair question that deserves an informed response. Several of the readers on this blog have given me some information from their own lives. These papers add to that knowledge.

The answer (#1)

They are and they will.

The question (#2)

This came up during reading of the papers. Does patient engagement come from having knowledge? Or does knowledge come from being engaged? This came up because patients in the first study who did not have knowledge about why they should monitor their blood pressure or how to do it seemed less engaged.

The answer (#2)

Unclear, with the implication being about whether to work to engage patients with more knowledge or use knowledge as a means test for engagement. I think regardless of the answer, there’s no reason not to provide information to patients. That answer is good enough in this case.

Read on for more conclusions….

Continue reading “Now Reading: A Few Peer-Reviewed Articles About Patient Willingness to Self-Monitor”