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WHO in Geneva – SPM in the house!

SPM member Casey Quinlan (who’s posting this) was invited to attend an event at the WHO in Geneva. This post originally appeared on her Mighty Casey Media blog, and is reposted here in its entirety by SPM request.

Guess who got invited to WHO? No, really.

The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation.

WHO_signsI spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them.

This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing.

Challenges

There’s an old joke that asks, “What’s an elephant?” The answer: “A mouse designed by a government committee.”

That’s the risk, and challenge, to any attempt to build a definable set of standards for a human effort. Education, transportation, trade, infrastructure, communication, medicine – all require some sort of standardization to make them useful to more than one or two people huddled over a campfire. A study of history will show that as much as we humans are great idea generators, trying to get the rest of the tribe to adopt our new idea isn’t easy.

The father of quantum mechanics, Max Planck, said it best: “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.” To paraphrase: Science advances one funeral at a time.

Medicine, which has been practiced for millennia by magical beings initiated into secrets of “science” that could not be understood by the common human, has only become understandable to the average Joe and/or Jane as public education has become available across the globe. Public education still isn’t available everywhere, and the character and content of that education can be complicated by cultural views of science, of the education of women, and other factors that impact access to information.

So the challenges I see here are two-fold:

  • Calcified thinking in power structures, both scientific and political.
  • Lack of science education and information access in the wider population.

That’s true in developed nations – just witness the “science denial” movement in the US that stubbornly insists on not being confused with facts on issues like climate change or human reproduction – as well as in emerging nations that are still building basic infrastructure.

Opportunities

Well, let’s start with who was in the WHO-room. Clinicians, policy wonks, and healthcare advocates from Uganda, India, Canada, Ecuador, Pakistan, Saudi Arabia, Belgium, Ireland, the UK, the US, Switzerland, the Netherlands, Thailand, Australia, China, and Malaysia, along with a wide array of WHO folks from their Geneva HQ as well as a robust representation of their Western Pacific Region Office (WPRO). WHO’s Envoy for Patient Safety Sir Liam Donaldson (that link is to his Twitter feed, which I highly recommend) was actively engaged in every part of the discussion over the two days, and I was deeply encouraged by his clear insights into the issues we’re all wrestling with in transforming the global healthcare system.

The story that had the biggest impact on me was the one told by Dr. Jonás Gonseth, head of Hospital de Especialidades in Guayaquil, Ecuador. His experience was one that I think spotlights the core problem: lack of trust in the care delivery system by the people that system purportedly serves. I wish I had a link to the video he shared, which clearly showed the lack of trust that the Ecuadorian people had in their healthcare system. Demonstrations outside the hospital, intercut with a number of clips that included a patient on a gurney being rolled toward the hospital door who got dumped on his head when the gurney tipped over as the dweeb hauling it couldn’t figure out how to get it over a curb … you get the picture.

Dr. Gonseth was asked (begged?) by the President of Ecuador to tackle the mess that was the Guayaquil Hospital de Especialidades. In just over two years, he’s worked what could be called miraculous change in quality improvement and patient safety, largely by advocating for community social participation in that work, and for patient empowerment. He’s transformed the culture inside the hospital, and the level of community trust in the care delivered by that hospital. The money quote: “It was such a disaster we had nothing to lose [by involving patients].”

What that story told me is that grassroots frustration with healthcare systems is a global issue, one that was made clear by all the from-the-ground presentations over the two days. That leads me to the opportunities here, which are shared by both developed and emerging countries:

  • “Start where you are. Use what you have. Do what you can.” That quote from Arthur Ashe makes it clear that any – ALL – of us can work on healthcare system transformation. So let’s get this party started.
  • Transformation does not happen from the top down. There does need to be a leader, but a successful leader will more likely come from outside the system needing the transformation.

That calcified-thinking challenge I mentioned above presents a solid opportunity to those of us on the ground, working to transform the system. Designing from the outside in is a software development approach that focuses on satisfying the needs of the end user. Healthcare systems *must* look at system transformation from that perspective: start with the people you’re serving, not with the folks running the hospital/professional society/medical association. The people being served – THE PATIENTS – are the end-user stakeholders.

Pitfalls

There’s much inertia confronting transformation of a massive human system like healthcare delivery. It’s exhausting if you look at it as a “system,” but since it is a system, any action has to be considered in the context of what sort of dominoes – or dynamite – that action might trigger. Plus, attempts at transforming bureaucratic process lead to what I’m going to call Donaldson’s Dictum (in honor of Sir Liam Donaldson, who said it): “Ability to simplify bureaucratic complexity draws heavy fire from the bureaucrats who create that complexity.”

And then there’s the elephant in every room: the money. Whatever the economic basis is for the healthcare delivery system in question, getting quality improvement and patient safety into the budget is a daunting task. Dr. Jonás Gonseth effected his hospital transformation in Ecuador without any increase in budget, but I wonder how much heavy lifting he had to do to sell his ideas to the bureaucrats? Since he’d been asked by the country’s President to take charge and fix a major mess, that might have gotten him through the first week. But transformation at this level takes months and years, so figuring out where the money’s gon’ come from is critically important.

So, in short:

  • Is there a budget for real system transformation?
  • Is there enough political will to allow that transformation to occur?

Hopes

Health_Care_is_a_Right_Not_a_PrivilegeWhen it comes to complex systems thinking, I’m a simple creature. I believe that the more complex the system you’re looking at gets, the more you have to go right down to the molecular level to regain perspective.

If you’re trying to end a disease like polio, you have to start where Jonas Salk did: with the virus itself. If you’re trying to create a healthcare system that delivers human health, you have to start with … the people who are seeking health care. June Boulger, Ireland’s National Lead for Patient and Public Involvement in Healthcare, said the overarching message of her work is “people helping people.”

When I took the mic to make a comment on Monday afternoon, I told everyone in the room to run right back to the ground level whenever they got too “system”-y in their thinking or their approach to quality improvement, delivery improvement, and/or patient safety.

Design from the outside in, begin with the end in mind, “start where you are, use what you have, do what you can,” lather, rinse, repeat.

That’s my entire philosophy of healthcare system transformation in one sentence.

Let’s get this party started.

 

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What has happened to the Personal Health Record?

By Nancy B. Finn

There has been so much discussion online and in the press about electronic health records and physicians sharing EHR data with patients via such tools as OpenNotes and Blue Button, that the personal health record (PHR) has been lost in the dialogue.

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Mayo chief residents name SPM patient as Visiting Professor in Internal Medicine

Wikipedia says “Participatory medicine is a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and … providers encourage and value them as  full partners.”

That movement gets a big boost in credibility today: the Chief Residents at the Mayo Clinic have invited SPM co-chair “e-Patient Dave” to be their Visiting Professor in Internal Medicine next March. The announcement is being made today, during the patient panel at Mayo’s sixth annual social media summit. Here’s their post.

Their press release:



“A union of forces between providers and patients”:
Mayo chiefs name a patient as 2015 Visiting Professor

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WSJ: “Researchers are asking patients to help design clinical trials.”

I could smack myself for not noticing this earlier, but it happened while I was at the ESMO conference (the “European ASCO” cancer conference) in Madrid last month: Amy Dockser Marcus has another great piece on how medicine is truly starting to engage with patients as active contributors to improving healthcare. Woohoo!

The lede:

Scientists regularly sign up patients in clinical trials to test new treatments. Now, they are seeking patients to help them design some of those trials.

Patients and researchers can bring different perspectives to treating disease …

Screen capture of Wall Street Journal

It seems clear that medicine is starting to act on the Institute of Medicine’s mandate in Best Care at Lower Cost:

A learning healthcare system is anchored on patient needs and perspectives.

Doesn’t this dovetail deliciously with the presentation I blogged about on my own site, on involving patients earlier in the research process?? Imagine: Scientists asking patients what they think is important!

Clearly, science is starting to act on the realization that patients are no longer the passive beneficiaries of what scientists think.  (It also matches nicely Laura Landro’s front page WSJ piece in June, “Health-Care Providers Want Patients to Read Medical Records, Spot Errors”.

This is a major shift in the wind, and it’s spreading. Watch for more of this in the coming months.

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Remembrance in New York: “Jessie Gruman, the Force”

Yesterday at the New York Academy of Medicine was the first of Jessie Gruman’s two remembrance events, which we blogged about. Here’s a view of the gathering, which was followed by a reception.

Jessie's gathering 10-5-14 at New York Academy of Medicine

Jessie’s gathering 10-5-14 at New York Academy of Medicine

It was a fitting, moving, great tour through her life, with short talks by many people who knew her: Jessie the Child, Jessie the Adolescent, Jessie in Israel, in New York, at CFAH, Jessie the Patient, the Advocate, the Traveler, the Sister, the Friend. And Jessie and Richard (Sloan), her soul mate and husband of 34 years; and the last, titled “Jessie, the Force.”

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New on JoPM: “e-Patients Never Retire”

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e-Patients Never Retire

That’s kinda by definition, eh? But there’s an uppity Sixties edge to this, and with this too I couldn’t agree more.. Excerpt:

Older patients have something to tell their health care providers: look at me; listen to me; and speak with me rather than to the person who may have come with me to the visit. Gray hair doesn’t signal senility.

What’s your experience been? Have you met up with doctors, nurses and office staff who could use a wake-up smack on the side of the head?

Of course I recommend first saying courteously how you’d like to be treated: be self-aware and be empowered: speak up and say how you’d like to be treated. And physicians and staff, realize: a generation ago 80 may have often seemed “feeble,” but not so much, anymore.

The times, they are a-changin’!

 

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The diverse nature of patient communities: a prostate cancer patient’s experience

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The diverse nature of patient communities: a prostate cancer patient’s experience

Should SPM develop and maintain a list like this?  Who would do the work? Heaven knows my list is disorganized and needs housekeeping – I’d be glad to have someone do a better job of it!

 

 

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Jessie Gruman: Poetry in Motion

This essay was written by Sarah Greene, co-founder of the Journal of Participatory Medicine and currently Founder/CEO of RapidScience.org

“That the powerful play goes on, and you may contribute a verse.”

- Walt Whitman, ‘O Me, O Life’

We New Yorkers have been marveling at the beautiful weather bestowed on us this summer, and yet the dark and heavy cloud of Jessie’s leave-taking on July 14 has kept me in a months’-long swelter.  I think Jessie would have dubbed this an ‘Aftershock’, although in her book of this title the heroine returns to offer sage learnings after jousting with the Grim Reaper.

I’ve found inspiration, if not solace, re-reading her writings in books, the Prepared Patient blog, and various other essays, and have witnessed her grace again in the “Good Behavior!” videos. Not to mention the many eloquent tributes to her legacy at the Center for Advancing Health, where I was honored to serve as a trustee, and at the Journal of Participatory Medicine (JoPM), on which we worked closely in its infancy.

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(Video) Larry Weed, father of the Problem Oriented Medical Record – Grand Rounds, 1971

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In the late 1960s Dr. Weed created the concept of the POMR: the Problem Oriented Medical Record, and the corresponding concept of SOAP Notes (Wikipedia). Physicians have told me that these ways of organizing medical thinking truly revolutionized the practice of medicine – I’d welcome discussion in the comments.

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Zack Berger from #MedX on uncertainty and decision aids

Graphic "Maybe we have no idea what we're doing"

Graphic from his original post. Source: wrdbnr.com

Regular readers may recall SPM member Zack Berger MD PhD’s July post here The pledge of the patient-centered physician. Zack is one of the many SPM members attending the Stanford Medicine X conference this weekend and sends this Saturday night report, cross-posted from his book’s blog.

We’ve often written here about shared decision making, which helps patients choose based on the best available evidence. Here, Zack touches on an alarming but real aspect: what if the evidence is not so good? What have we accomplished? Can we (all) tolerate uncertainty?
_____________

I’m at the Stanford Medicine X conference, which provides much food for thought. Here’s tonight’s musings, based on an assumption which is quite prevalent among patient-centered health care folk today (a group I consider myself a member of). The assumption? More data is better.

That’s a red herring. We all know that only the right data, data linked to better health, is actually useful.

How do we get good data into the hands of patients to – among other things – aid their decision making? Decision aids have been much publicized, and for good reason. They are the next step, taking us from the evidence we already know about to the shared decision making we are trying to achieve.

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Request: true stories of where patient engagement in the chart made a difference

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(By the way, the event is open to the public, and is just $99, an amazing deal. Among the speakers will be Karen DeSalvo, head of ONC.)

Anyone??  It could be yours, or one you’ve seen in the press.  I asked on the SPM members-only listserv and here are the answers I received.

Southern California member:

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