As we noted in April, TEDMED and the Robert Wood Johnson Foundation have designated “The Role of the Patient” as one of the twenty TEDMED Great Challenges for 2013, and the TEDMED site will host a big conversation about it in the coming months, seeking input from all over. In the Great Challenges voting, Role of the Patient placed third, and its cousin The Caregiver Crisis placed second.

Both issues affect patients and families daily, and will increasingly affect providers in the US as the Affordable Care Act rolls out. We’ve heard from SPM members in other countries that both issues are big for them, too.

As a first step toward those discussions, I’d like input from participatory thinkers for a retreat this Sunday through Tuesday. It’s the annual Forum of the ABIM Foundation; I’m attending as a representative of the Society for Participatory Medicine, and this year’s topic is especially amenable to our input. This post will provide context and invite comments from all over.

About the ABIM Foundation

The American Board of Internal Medicine is one of the two major groups who certify internal medicine physicians. Its Foundation is a separate organization devoted to medical professionalism. The Foundation’s most visible public outreach was this year’s “Choosing Wisely” campaign. From the Foundation’s site:

On April 4, the ABIM Foundation, along with nine medical specialty societies and Consumer Reports, formally launched the Choosing Wisely® campaign. Participating specialty societies each identified “Five Things Physicians and Patients Should Question” to help spark conversations between physicians and patients about the need —or lack thereof— for many frequently ordered tests or treatments.

About this forum:

The theme is “Choosing Wisely in an Era of Limited Resources.” From a post by the Foundation’s Daniel Wolfson:

At the 2012 ABIM Foundation Forum, 140 health care system leaders, consumers, physician leaders – both in practice and academic medicine, researchers, medical students and residents, payers and purchasers will gather to explore how to accelerate changes to improve delivery of care, with special consideration given to the increasing number of Americans entering the system.

Several innovations in the public and private sector are already underway and should stimulate the conversations at the Forum, including:

• changes in how services are paid for;
• improvement in the coordination and transition of care;
• engaging patients in shared decision-making; and
• capitalization and redesign of primary care.

Outcomes:

At the Forum, participants will not only identify potential solutions to the problem of rising costs, they will also identify barriers to implementing change in health care delivery systems …

Included in the list of obstacles is:

• patients and consumers are often not involved in the design of changes. When redesign is not patient-centered and without being involved, the public rejects those changes.

Thank goodness! I hardly ever hear this mentioned at conferences, but in what other industry would it be a surprise that consumers are less interested in something that was designed without them??

And that, ladies and gents, is where you come in. What do you want to see? None of us can have everything – limited resources – so what do you feel is wise? Speak up in the comments.

Logistics:

Sessions start Sunday morning (8 a.m. PDT) and go through Tuesday morning. The group size is big enough to include many perspectives but small enough to maintain a sense of intimacy and connectedness.

Seating is assigned(!) each day – last year, on the morning I found out I couldn’t get health insurance in New Hampshire, I was assigned to sit next to Don Berwick, head of Medicare, and he gave me the URL for the N.H. high-risk pool. Sweet.:-)

Following on Twitter:

I don’t know how active the Twitter feed will be – they welcome tweeting at hashtag #ABIMF2012, but my experience is that when there’s a lot of intense thinking going on, it’s hard to tweet in real time. In any case, follow the feed by searching #ABIMF2012 on Twitter.com, or these sites:

• Symplur’s Healthcare Hashtags project: http://www.symplur.com/healthcare-hashtags/abimf2012/
• Tweetchat.com (live, real-time streaming): http://tweetchat.com/room/abimf2012
• The Foundation’s Twitter ID is @ABIMFoundation.

Patients Included

This event gets Lucien Engelen’s “Patients Included” checkmark for including these patients:

• Meg Gaines, ovarian cancer survivor and Director of The Center for Patient Partnerships, U of Wisconsin-Madison
• Mark Gorman, Silver Springs MD
• me

Patient advocates include

• Michelle Rhee, Manager of Program Initiatives, National Brain Tumor Society
• Louis Colbert, Delaware County Office of Services for the Aging

Conspicuous other patient/consumer-oriented participants include:

• Jim Guest, President & CEO, Consumer Reports
• Debra Ness, President, National Partnership for Women and Families
• John Rother, President & Chief Executive Officer, National Coalition on Health Care

What do you think?

It’s crunchtime in American health care, folks: as Aetna CEO Mark Bertolini said in his talk at the big HIMSS health IT conference, the Affordable Care Act means everyone’s revenues will be dropping, and any firm that wants to still have margins will need to find new efficiencies.

Here at the Society for Participatory Medicine, we firmly believe – we know - one solution: let patients help heal healthcare. In a time of tough choices, it only makes sense to engage consumers in deciding what’s important. And if we don’t, other parties will, and without our input they won’t have a chance of knowing what we want.

So what do you want? What solutions can you propose? And what obstacles to change do you see?

Feel free to spread this request to every other participatory organization you know, too. They can blog their answers on their own site, if they want, and drop a link here so we know where to find them. Participate!

I was able to secure a scholarship to TEDMED 2012, thanks to TEDMED organizers and Johnson and Johnson. TEDMED is an annual feast of Health and Medicine innovators and has recently moved to Washington DC from San Diego.

You can see the great summaries of TEDMED on their blog page. Since there are so many sessions and such variation in topics (Medicine, Healthcare, Patients, Doctors, Artists, etc), the experience for every participant will be different. This is my summary of the talks that I liked. I hope the TEDMED community will post the videos soon so that everyone will enjoy them.

Jonathan Eisen‘s talk was about useful microbes in our life and how our modern life is removing these microbes (over cleanliness!). He was diagnosed with diabetes and this got him studying about how the lack of useful microbes might be causing the auto immune diseases like diabetes, allergies, etc. One of the startling findings he mentioned related to how kids born by C-section are at a 3-4 times higher risk for auto immune disorders like allergies and type-1 diabetes. He is also an avid blogger and is on Twitter too.

video by E-Patient Dave and follow him on Twitter.

In my previous post about TEDxMaastricht, I had talked about how the TED talks do not have a Q&A in the end. I felt that this format hurt the conversation since there were some talks which could have used some conversation. There was a talk from Jon Cohen, from Quest Diagnostics on if patients can be like consumers. In my opinion, it did a tremendous disservice to empowered patients by stating that patients will judge the quality of a doctor or hospital by things like availability of donuts in the waiting room. I feel like this might be the difference maker if all things are equal but in the example quoted by the speaker (hernia surgery), I feel patients do make the right judgment. It is to judge quality of health delivery based on outcomes (did the patient get all the information they needed about the surgery, did it help them? etc). The speaker also said that medicine quality should be based on “judgment” and “experience” of the doctor. I felt that even though “judgment and experience” are important from a medicine’s point of view, it does not matter to a patient as long as the outcome does not match expectations. I saw that many people disagreed with the speaker on Twitter. A conversation at TEDMED would have helped clarify the speaker’s thoughts.

Dr. Atul Butte of Stanford University had an interesting talk about how science is now democratized thanks to the web. Just like Elance.com and odesk.com brought outsourcing to technology and other tasks, there are websites like Assaydepot.com which is bringing outsourcing to science, pharmacology and toxocology tests on the web. I had never heard of this and I was very surprised to find that you can even outsource your mice tests!

We also heard from Dr. Diane Kelly who has done amazing original work on invertebrate penises (yes, penises!). She described her research in a very fun and very easy to understand way. Her research is related to answering the question of what is unique of the penis structure that helps in maintaining its shape during erection. I cannot wait to see the video of this talk. She blogs at Science Made Cool.

There were also artists who performed and showcased their works at TEDMED. I got to meet Regina Holliday, of the walking gallery fame, in person. She paints to give the patient voice in health information technology. Her story is very powerful and is a must read on her blog!

We heard the story of Ed Gavagan. He was stabbed on the street in some gang initiation ritual and he survived due to the timely actions of the emergency personnel and the doctors. His video will be very powerful to watch since no words can describe his experience narrated on stage.

There were many, many more powerful talks. These are the ones that I remember. I will post more thoughts as and when my memory helps me in the coming days. If you saw some talks that should be included, please do let me know so that I can write up another post with the ones that I missed here!

Some have said this is a horrible thing to bring up when families are gathering with joy. But family communication is the whole point. We don’t mean you should discuss it at Thanksgiving dinner; we mean, discuss it while you can.

It’s about being empowered and engaged, in this most intimate of life decisions.

We’ll start with the 2010 TEDMED talk by Alexandra Drane, who tells the story of how she founded this movement after her sister-in-law’s death. Bring tissues for the middle part, where the importance becomes real.

And now this year’s post.

Once again, this Thanksgiving we are grateful to all the people who keep this mission alive day after day: to ensure that each and every one of us understands, communicates, and has honored their end of life wishes.

Seems almost more fitting than usual this year, the year of making change happen. 2011 gave us the Arab Spring, people on the ground using social media to organize a real political revolution. And now, love it or hate it – it’s the Occupy Wall Street movement that’s got people talking.

Smart people (like our good friend Susannah Fox) have made the point that unlike those political and economic movements, our mission isn’t an issue we need to raise our fists about – it’s an issue we have the luxury of being able to hold hands about.

It’s a mission that’s driven by all the personal stories we’ve heard of people who’ve seen their loved ones suffer unnecessarily at the end of their lives.

It’s driven by that ripping-off-the-band-aid feeling of relief you get when you’ve finally broached the subject of end of life wishes with your family, free from the burden of just not knowing what they’d want for themselves, and knowing you could advocate for these wishes if your loved one weren’t able to speak up for themselves.

And it’s driven by knowing that this is a conversation that needs to happen early, and often. One of the greatest gifts you can give the ones you love is making sure you’re all on the same page. In the words of the amazing Atul Gawande, you only die once! Die the way you want. Make sure your loved ones get that same gift. And there is a way to engage in this topic with grace!

Here are the five questions, read them, consider them, answer them (you can securely save your answers at the Engage with Grace site), share your answers with your loved ones. It doesn’t matter what your answers are, it just matters that you know them for yourself, and for your loved ones. And they for you.

We all know the power of a group that decides to assemble. In fact, we recently spent an amazing couple days with the members of the Coalition to Transform Advanced Care, or C-TAC, working together to channel so much of the extraordinary work that organizations are already doing to improve the quality of care for our country’s sickest and most vulnerable.

Noted journalist Eleanor Clift gave an amazing talk, finding a way to weave humor and joy into her telling of the story she shared in this Health Affairs article. She elegantly sums up (as only she can) the reason that we have this blog rally every year:

For too many physicians, that conversation is hard to have, and families, too, are reluctant to initiate a discussion about what Mom or Dad might want until they’re in a crisis, which isn’t the best time to make these kinds of decisions. Ideally, that conversation should begin at the kitchen table with family members, rather than in a doctor’s office.

It’s a conversation you need to have wherever and whenever you can, and the more people you can rope into it, the better! Make this conversation a part of your Thanksgiving weekend, there will be a right moment, you just might not realize how right it was until you begin the conversation.

This is a time to be inspired, informed – to tackle our challenges in real, substantive, and scalable ways. Participating in this blog rally is just one small, yet huge, way that we can each keep that fire burning in our bellies, long after the turkey dinner is gone.

Wishing you and yours a happy and healthy holiday season. Let’s Engage with Grace together.

To learn more please go to www.engagewithgrace.org. This post was developed by Alexandra Drane and the Engage With Grace team.

• “To improve health and health care, we need to start asking…”
• “To improve health and health care faster, we must…”
• “My bold idea for transforming health and health care is…”

You can see the results of this thought experiment on Flickr, on Twitter (#ideapowered) or on YouTube. Here’s what I said:

The sound isn’t perfect, so here’s what I meant: Acknowledge the power of networked patients and caregivers.

Many people talk about how consumers are the greatest untapped information resource in medicine, but the Pew Internet Project’s research shows that patients and caregivers are already accessing that knowledge via social media (and less whiz-bang technologies). The health care system just needs to tap into the parallel system that has sprung up.

What do you think?  Which of the questions would you like to answer?  Please tell us in the comments.