Comedian Anthony Griffith preformed on the Tonight Show with Johnny Carson. While he was making the audience laugh, he was in tremendous pain inside.
This is a raw, hard story. It’s about taboo, cancer, blame, loss, acceptance and pluralism —common emotions in healthcare, ones not easily discussed, let alone in front an audience.
You should watch this.
(there is some rough language)
I don’t have much to say to preface this video. It is, simply put, the best YouTube video from a hospital I’ve ever seen.
2/13 update: Videos for the panels are now available on the Health Affairs site.
Sometimes it’s about the idea, and sometimes it’s about validating existing ideas. Last week, the well-regarded health policy journal Health Affairs hosted a briefing on The New Era of PAtient Engagement. I attended and left feeling satisfied, even excited, and also frustrated and a tad disappointed.
The briefing was a forum for researchers and authors of articles in the February edition to present their work. Many of the topics focused on ways to activate patients or to get patients engaged in their care. Proponents, supported by compelling data, argued activated or engaged patients have better outcomes and reduced costs.
The presentations ranged from reports on data, to emotional appeals. Some, in particular Jessie Gruman, did a nice job of mixing both. Kristin Carman presented an amazing Framework For Understanding The Elements [of shared decision making] pictured here:
I sensed frustration from some attendees. We proved the value of engagement years ago, this isn’t new… and why aren’t there actual patients represented on the panels?. Some even, appropriately, called attention to the fact that Health Affairs requires a subscription to view most of the articles (some where funded by PCORI and made publicly available).
Personally, I was disheartened by some word choices. Implying patients need to be activated suggests patients are passive and something has to be done to them in order for them to care about their health and interactions with healthcare providers. That misses the mark.
What about phyisician activation? we have an opportunity to collaborate on a new model which reduces the power-distance index between providers and patients. We should be helping health systems and providers find ways to reduce the stress and fear for patients who are already engaged.
I appreciate all the concerns, and agree with many of them. But I am, none the less, excited about what Health Affairs has done. It’s important for us to have forward-thinking visionaries who knew were focused patient centered care years ago. It’s important to recognize the importance of what Health Affairs has done.
Five years ago, would a major publication have dedicated an issue to patient engagement? I doubt it. Howard Koh, MD, Assistant Secretary for Health, US Department of Health and Human Services, opened the briefing and called attention to its significance. His presence alone suggests the patient experience and engagement is on the minds of top officials.
I’m reminded of this video of the shirtless dancing guy:
My takeaway from the Health Affairs briefing is the same as the video’s message: it’s not about being the first, it’s about validating those who dare to put forth new ideas. In this case, patient engagement, shared decision making, and participatory medicine are not new. What is new is the attention from major publications, providers, policy makers, administrative leaders and researchers. That’s something worthy of a happy dance.
Pew Internet’s Susannah Fox, today, released the official report behind her amazing Stanford Medicine X talk. The report is a great read for data geeks, health wonks and ePatients alike. But there’s one part in particular I find especially indicative of an impending disruption in how we approach medical care as patients.
According to Pew:
Seven in ten (69%) U.S. adults track a health indicator for themselves or a loved one and many say this activity has changed their overall approach to health, according to a new survey by the Pew Research Center’s Internet & American Life Project.
This is the first national survey measuring health data tracking, which has been shown in clinical studies to be a tool for improving outcomes, particularly among people trying to lose weight or manage a chronic condition.
Of all the results, I find one in particular compelling:
40% of trackers say it has led them to ask a doctor new questions or to get a second opinion from another doctor.
I’m predicting 2013 and 2014 as the years we see a sea-change towards true consumer-driven health. In the past, wonks have spoken about high deductible plans and health spending accounts as the economic vehicle to compelling consumer behavior. The problem with that version is it assumes people will consume less healthcare services if they are footing the bill.
There is some truth regarding spending usage. But, largely sick people will seek care and people without access —via insurance or a government program —will delay care until the need is chronic and more costly.
What I’m excited about, based on the Pew results, is the potential of true consumer driven healthcare. Today, it’s increasingly easier to wear a gadget and get direct access to cutting edge lab tests. For $99, 23andMe will examine your DNA an report back some pretty amazing data.
So, if 40% of people report asking new questions based on following their own health indicators, how long before patients become the initiators of a care plan? Rather than rely on doctors to discover whats wrong with us, we’re moving a world where we might know more about ourselves before we seek a doctor than after seeing one.
That idea might challenge some people, including doctors. Rest assured, it doesn’t eliminate the need for doctors. We’re simply looking at a period of disruptive innovation which will change the role of physicians (in some circumstances). It’s a bit like coming to an architect with your own rough draft of blueprints.
For more about Susannah Fox, Pew and the report, check out the video interview from Medicine X:
Susannah Fox – Medicine X Conversation from Larry Chu on Vimeo.
Beryl Benderly, writing for Kaiser Health News and NPR’s Shots blog, tackles an important topic: misconceptions from providers about disease. In this case, Benderly writes about sickle cell.
There’s a lesson to be learned in this story for providers. And, is often the case, it is one of participatory medicine.
Patients suffering recurrent episodes know what works for their pain, but some doctors and nurses take that knowledge a sign of addiction. Patients with sickle cell pain wait an average of 30 minutes longer for pain medication than people with other extremely painful conditions, such as kidney stones, Tanabe’s research shows.
Patients know what works for their pain. That’s pretty simple. The painful part, aside from the actual pain, is the stigma so many patients have to battle to get the treatment they know to be effective.
One has to imagine, in a world where providers embrace patients as part of the care planning team, trust also increases.
Source: NPR Shots: Fighting Misconceptions About Sickle Cell Disease In The ER
