Friday, January 8, 2016

People Power

There's a fascinating article that I was digging into earlier today that was published near the end of the year 2000 called "Healthcare in a land called PeoplePower: nothing about me without me." First of all, how I've never read this before is a mystery to me. It's about a new and perfect system for healthcare for a mythical republic called PeoplePower that was dreamed up by a group of folks from varying backgrounds with their guiding principle being "Nothing about me without me." Amen I say to that!

The ideas that were expressed in this paper, which I highly recommend you go read - heres the link again  - were the groundwork laid 16 years ago for where we are today in healthcare and where we still need to get to. Some of the highlights:

  • computer-based guidance and communication systems; 
  • patients and clinicians depend heavily on secure electronic mail for communication and a growing number of technologies help patients monitor symptoms and signs in the home;
  • the Internet-based patient record exists as a single version that resides nowhere but is available everywhere; 
  • patients have nearly complete access to their medical record (although they don't have to review their record if they don't want to), but they also write in it, elaborating, tracking and explicating problems, correcting mistakes, prioritizing needs, and at times suggesting both diagnoses and treatment plans; 
  • shared decision-making as a national standard for clinical interaction; 
  • data donation with opportunities to aggregate data, establishing a `virtual' national laboratory that houses standardized, core measures of the processes and outcomes of care to allow for the conduction of evidence-based, epidemiological research that informs and improves care; 
  • a constant stream of feedback, both through surveys designed to provide aggregate data and by inviting individual anecdotes; 
  • patients join in a wide variety of hospital eff€orts, ranging from ad hoc work teams developing new initiatives, to the array of committees overseeing diff€erent hospital functions;
  • those who legislate, regulate and pay for health care work closely with patient advocacy councils and include lay representatives on their principal committees, working groups, review boards and consensus panels; 
  • a level of service that delights and surprises both the `caregiver' and `caregetter' with unanticipated levels of excellence.
Can you imagine if we had these things, like all of these things, in place and working smoothly today? I, for one, wouldn't have a kink in my neck from the stress of the past week trying to navigate the mess that is new insurance. What do we need to do to get from where we are to where we need to be? How can we expedite things? How do we achieve this, something that was written about in just exquisite detail, capturing exactly what we needed, then, and still now? 

My experiences over the past several days and years leave me frustrated and scratching my head, trying so hard to identify where the system breaks down. There are so many moving parts, and there as so many good people doing some many good things with very little, if any, insight into whats happening with every other component. A drug company may design a great patient co-pay assistance program, but if the patients insurance won't allow the patient to obtain a brand name version of the prescription, something required of the co-pay program, understandably, then there is no benefit to the patient after all. Many people with chronic conditions carry more than one insurance, with the secondary often being a form of government support. That support is rendered useless when your primary insurer requires that you receive a 90-day supply of your medications but your secondary insurer will only support whats not covered on a 30-day supply. 

Everyone seems to be doing really well at whatever it is they are doing, but we haven't quite yet figured out how to all work together - the clinicians and the patients and the policy makers and insurers and drug manufacturers. We meet in groups maybe sometimes, but it is rare that we are often all together, working together for the greater good. No doubt work is constantly being done for the greater good, its just not happening all together, its happening in silos. The value to breaking down those silos of excellence, connecting them into a circle of excellence, to all of us, is huge; to really take a leap and achieve something new, really different and better and transformational. I think its under appreciated how much everyone would benefit from this collaboration. 

Its often not until a unique perspective is added that you have the opportunity to see something differently. Someone I work with and greatly admire often uses the analogy of the high jump, and how for the longest time, the record stood at something around 8ft. For many years. humans simply couldn't jump higher. Until, someone looked at things differently, introduced a new mechanism, and the pole vault took humans to more than 20ft in the air. 

This healthcare thing seems an impossible task to repair - everyone with their own expert opinion on why its not working the way it should and whose fault is what - but its exactly what we are doing with our C3N work. Rather than designing components of a system, or perhaps even fantastic micro systems functioning completely independent of one another, we believe we can achieve better health and care by bringing all of the parts together. We started with an exercise quite similar to what was done at the Salzburg Seminar where PeoplePower was dreamed into mythical existence. We brought the patients and the clinicians and the researchers and the social scientists and the artists and the reporters and the policy makers and the administrators and the advocates and anyone who touches the system for CF care, we brought them together to dream about what our perfect system would look like, and at that time, we too, left feasibility (at least tried to) at the door. We had to imagine it first before we could dream it right into existence. And once we had that framework we started to get to work, trying to figure out more specifics, identifying barriers to creation or implementation of some of the things we had come up with. We split into groups and worked with others inside of the community who shared our passion, and we would then converge again as a whole to see how our parts fit together, how our system could work. We thought about how we would measure success, and we started to test and prototype some of what we were learning. We realized and appreciated that this wasn't going to be something that we create and then wipe our hands of and carry on happy, but rather a dynamic and forever changing and evolving system that invites and values collaboration and innovation from every single person involved.

That's where we are today. With support from the CFF and more people inside of and outside of the CF community than I can possibly name, we are piloting this work at a handful of CF centers across the country, with the hope to transform the entire CF system over the next 3-5 years (my number, don't hold anyone else to that) to test the impact of some of these different ideas on health and care. The goal? To achieve much of what was dreamed about 16 years ago, what I bullet-ed above. Scroll back up now and take another look. Go read that article, and think about how nice it would be if the system for CF care functioned like it did in the mythical republic of PeoplePower. The success of our transformation is dependent on people power - you and me and everyone who wants to see success, however you define it. Its about all of us working together for the greater good. And I'm all in. 

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