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.

Sara Hurley – Studying the It Gets Better Project

About Me « Sara Hurley. – I think this is worth a post because it’s an innovative and humane way to recruit people for a research study, very much in the spirit of social media.

I received a solicitation to take a survey for potential inclusion in the study on the YouTube channel attached to my It Gets Better video. I then clicked through to Sara’s page to find a video about her, the work, how it works, and why she’s doing it.

In a world where most study recruitment can seem impersonal and clinical I think this is a great approach. What if every researcher shared their passion about the work with their potential subjects in advance ? Or is this state of the art somewhere already?

I don’t know if I’ll be selected to participate , but I did take the survey, and you can too, if you are 18 or older, in the LGBTQ spectrum, and participated in a video for the It Gets Better Project.

I continue to be amazed by the conversation that the video I made is creating; those who come without love for people who are different then them are bringing it in an open forum that they do not control. And they are now in the minority. What a change from the days when the minority had no voice, and how important that people who are scared about their future can see this and feel less so.

I’m glad this phenomenon is being studied and I look forward to the results.



90-9-1 – Brilliant idea for a web site for a concept that I often try to explain. 90% of users are the “audience”, or lurkers. The people tend to read or observe, but don’t actively contribute.
9% of users are “editors”, sometimes modifying content or adding to an existing thread, but rarely create content from scratch.
1% of users are “creators”, driving large amounts of the social group’s activity. More often than not, these people are driving a vast percentage of the site’s new content, threads, and activity.

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

Participatory Medicine: “There might be something to this”

e-patient Dave wrote me recently and asked:

Do you have a post you’d like to submit, in which you discuss Participatory Medicine either philosophically or from the physician’s perspective, so that docs and health leaders who read it think “Man, there just might be something to this”?

His request hit on a self-acnkowledged weakness (or strength, in the social media world) of mine, which is that I am not good at being prompted what to write. So, even though I missed the terrific Participatory Medicine Grand Rounds, I thought and thought about it, and I decided (spontaneously) to write something, and to show something.

What I want to write

In a post I wrote after visiting the team behind the personal health record for farm workers in California, I laid out this scenario. See if it helps you visualize what it could be like not to participate in your own health care.

Imagine that you were working internationally and had a serious stomach ache and needed to see a doctor. When you went into the medical clinic, the doctor asked you what medicines you were taking and what the status of your medical conditions were. What if you didn’t know or couldn’t tell them because you were in so much pain or you had seen a doctor but they didn’t give you a copy of your medical record. What if you lived in that same community for 5 years, but weren’t sure if you needed any medicine or treatment to prevent illness, and no one was keeping track. What if it felt like you didn’t belong….

Maybe this scenario is not far off from the health care you receive today, in the United States.

The title of the post is “Because Everyone Wants to Belong.” An important reason for supporting Participatory Medicine is that everyone not only wants to belong, they deserve to belong.

What I want to show

This is a piece of art that grabbed and made a huge impact on me within seconds of viewing it, at the National Portrait Gallery.

It shows the work of a person who fought to promote participation, Eunice-Kennedy Shriver. The artist is David Lenz – “Lenz, whose son, Sam, has Down syndrome and is an enthusiastic Special Olympics athlete, was inspired by Shriver’s dedication to working with people with intellectual disabilities.” (source: wikipedia)

She set out to change the world and to change us, and she did that and more. She founded the movement that became Special Olympics, the largest movement for acceptance and inclusion for people with intellectual disabilities in the history of the world. (from Statement from the Shriver Family)

You can see the drive … in her eyes. This is what excites me about participation. I can’t help it.

See if you think there’s something to participation in any or all of the above; thanks for reading, and watching.

Photo Friday: We Love Logan Circle

This week’s photograph was taken on the sidewalk near 15th and P streets, in Washington, DC, also known as the Logan Circle Neighborhood.

The retail store Lululemon was putting on an impromptu show for neighborhood residents.I have written previously about Lululemon’s approach to growing their business by integrating into the communities by building showrooms staffed by community yoga instructors. It’s a great concept for health care too.

As I have been away from DC for the past week, it’s good to be back and be reminded of the diversity and philosophy of living (see the photo on the bottom right) that draws me to Washington or this part of any city I am fortunate to visit. It’s similar to the Suze Orman philosophy: People first, then money, then things. Enjoy.


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.

Presentation: From PHRs to Participation (National Partnership for Women and Families)

Today I gave the first official presentation in my new skin as a physician with The Permanente Federation. I was a little nervous leading up to this (as the tweet said) because this is earlier in the tenure of an organization than I would want someone to represent me.

I did this because it was National Partnership for Women and Families and the groups they work with. I am a huge fan of their work promoting friendly workplaces and blogged about this previously. I managed the newness to Kaiser Permanente by weaving in basic information about Kaiser Permanente’s onilne services (the slides in the middle) and including the names of the leaders involved and taking questions to provide more information later. I also planted a little seed at the end for the innovation potential of Washington, DC.

Today I also got to go on walking meetings with the famous (to me) Jacob Reider, MD , a family physician and health information technology innovator, and now Medical Director at Allscripts-Misys Healthcare Solutions., and soon to be famous (to me, but already to his fellow New Zealanders) Professor Jim Warren, Chair in Health Informatics and Chief Scientist for the National Institute for Health Innovation at the University of Auckland. Both Jacob and the Country of New Zealand have a lot of innovation up their sleeve, all involving patient centeredness in health care. Let’s cheer them on.

Click on any slide to see the images closer up. If you don’t know what the point of any image is, let me know in the comments.

Oh, last thing, the video I showed at the end is Kaiser Permanente’s latest TV commercial, launched in tandem with the 2008 Olympics. Kaiser Permanente now regularly uploads its media to YouTube. Sharing is healthy.

Now Reading: Are You Listening…Are You Really Listening? (it’s the killer app for Health 2.0)

This paper stands up really well on its own as a call to action around listening to patients and their families. It does a nice job of discussing the contribution of communication (or lack thereof) to a safe care experience, with some great quotes included, like this one, attributed to Julie Ann Morath, RN, MS, COO of Children’s Hospital and Clinics of Minnesota:

When you listen, it’s a demonstration of respect, and listening in itself is a healing practice.

The data presented are dramatic : in 77 % of patient/physician interviews, the patient’s true reason for visiting was never elicited. Patients are “redirected” by physicians on average, within 23 seconds.

This is also the hook for Web2.0/Health2.0 because what technology does is allow people to be heard, relative to their Web1.0/Health1.0 counterparts, and this is the action that the authors did not write about:

Actions that CMIO’s/CIO’s can take.

In that section, they would advise these leaders to consider carefully who the customer of their newly funded (maybe legally mandated) electronic health record is.

When they decide that the ultimate customer of the electronic health record is the patient, they would allow access to all of the information about that patient to themselves and those that care for them, privately, securely on line, inpatient or outpatient.

How does a personal health record promote listening?

When care providers open their electronic doors to questions about care, or questions about anything based on facts in their care that they can now access, listening becomes less of a choice – patients will ask questions about what they see and we’ll want to make sure they understand what we’re presenting to them in their electronic health records. This is what my colleague at Kaiser Permanente, Mark Snyder, MD, describes when he says the printed After Visit Summary “is a process, not a souvenir.” I wrote an example of this process here – I like that it gives you no option but to listen.

I found myself agreeing with a lot of the ideas written here, especially the one that the patient and their family are one of the most powerful barriers to harm in health care. The authors state it here:

“The hospital’s deepest resource of care information is patients and their families; this is because these people have the ability to share core root cause information, from symptom to outcome, that can drive the quality and safety of care in hospitals.”

And I said it almost exactly the same way in this month’s AHRQ Web M&M Spotlight Case.

Toward the end of the article, the authors write that this is not another paper that should collect dust on the shelve of a few “Safety Geeks.” Based on what I’ve been doing and what I saw most recently at the Health 2.0 conference, I can be reassuring that there are a whole lot of Geeks out there working to make listening happen. Come join us!