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In 2009, along with several physicians, patients and health activists, I helped form the Society for Participatory Medicine, a nonprofit promoting “a movement in which networked patients shift from being mere passengers to responsible drivers of their health, and in which providers encourage and value them as full partners.” I was drawn into discussions about the transformation of healthcare by the late Dr. Tom Ferguson, whom I met at a 1980s meeting of the Austin Writer’s League, where he was presenting about his publication, Medical Self-Care. Tom was a physician, with degrees in Creative Writing, and medical editor of CoEvolution Quarterly, a descendant of the Whole Earth Review and the one periodical I read cover to cover. The next time Tom and I met, around 1992, I was an early evangelist for the Internet, and forward-thinking Tom could see how access to the global network could empower patients to be more actively involved in their own treatment, and in the cultivation of knowledge about diverse health conditions. Tom and I became friends, meeting from time to time, always discussing the evolving power of many-to-many communication networks. In the 2000s, Tom worked with a loose group of other acquaintances to create a white paper called “e-Patients: How They Can Help Us Heal Healthcare.”
As the white paper neared completion, he invited me to share in the highly-relevant conversation about the failings of healthcare practices, and a need for innovative thinking and new perspectives on patient care. Empowered patients need to participate in their own treatment and research to drive health innovation. The “e-Patients” white paper opened with this quote from Dr. Charles Safran:
:…[When patients] participate more actively in the process of medical care, we can create a new healthcare system with higher quality services, better outcomes, lower costs, fewer medical mistakes, and happier, healthier patients. We must make this the new gold standard of healthcare quality and the ultimate goal of all our improvement efforts:
- Not better hospitals.
- Not better physician practices.
- Not more sophisticated electronic medical systems.
- Happier, healthier patients.
The “Patient” role is one we all occupy at some point. For those with chronic conditions, being a patient means constant ongoing interactions with providers and healthcare systems. Outside of the active patient role, many people proactively try to understand the strengths and failings of their bodies and their health. By changing the perception of the patient role from passive to empowered within the healthcare context, we bring new data and perspectives into the combination of intelligence and experience that can drive health innovation, where there is a clear and substantial need for innovation and improvement. Empowering patients to place emphasis more on health and prevention rather than active disease, thinking outside the box about delivery of services, gathering and use of data, treatment methodologies, pharmacological research are all increasingly critical aspects of redesigning healthcare.
Last November 15, I had the opportunity to attend the Austin Technology Council’s CEO Summit at the new Dell Medical School at the University of Texas. The school operates like a massive, heavily diversified startup and represents a new model for academic medicine advancing health clinical enterprise, and a driver for innovative, out of the box thinking.
Observations from the Summit:
- The fee for services model doesn’t work. We have to figure out another, disruptive model for healthcare delivery.
- The school strives to be an engine for transformation in health, not tied to the status quo.
- They want to prove out models of (systemic) change.
- Focus is on Health, not Healthcare, innovation.
- Healthcare should focus on the person, not the patient role.
- Create new infrastructures to support health (vs merely fighting disease).
- They want to connect with entrepreneurs to commercialize the products of their innovative research.
- They want to attract ideas from the people who are impacted and who deliver care, e.g. providers, patients, and community.
- They’re creating a model for the future of health - healthcare is broken. Costs are increasing and not sustainable.
- In medicine, practitioners are paid to do more, not better. They tend to be resistant to technology.
Dean Clay Johnston spoke saying that Dell Medical School is a “model for the future of health.” Healthcare is broken, healthcare costs are increasing. The U.S. has the highest healthcare spending globally, but is only 34th in healthcare outcomes.
Health happens at a community level, and we need community level data on health and innovation. Health research systems are broken, there’s a wall between research and care. We should be learning from contexts for care, but that’s not where we’re doing research.
It can take 11 grants to fund a single research project, and the research can drag on for years before it’s considered complete - a twenty year cycle from conception to results, and we accept this, even though the world around it is accelerating.
Dell Medical School is starting from scratch approaching health with out of the box innovation. The school and hospital are designed to disrupt, asking the question, “Can we create a better ecosystem for health innovation?” Can we find our way to a faster innovation cycle in health?”
They’re exploring requirements for a changed ecosystem: the product is value, which equals quality/cost. Currently no one is getting paid for better outcomes; and we need to change that.
Innovative results should be measurable, and to be effective must be embraced by culture. One goal is to minimize barriers to aligning incentives, and create a context where all participants, including patients, can be innovators.
Dell Medical School wants to focus on making Austin a model healthy city, in part by working with entrepreneurs and incubating innovative ideas about health care. This requires building value streams based on health value, and finding new partnerships with self-insured businesses, insurers, local health districts, etc.
Physicians who lead in creating better systems can potentially liberate entrepreneurs who focus on technology as an enabler of health transformation.
Given my focus on patient empowerment, I resonated with Johnston’s suggestion to take the physician out of the center of the healthcare story and put the patient there instead, re-orienting the system around the healthcare consumer. Also, as Johnston says, asking the question “what happens when a community is acutely aware of its own health?”
We need to further encourage collection and analysis of highly relevant health data at the community level. No two communities are alike, and this data is both a diagnostic for and predictor of future steps for healthcare innovation by the Dell Medical School, community partners and beyond.
First classes at Dell Medical School began in June 2016. The teaching hospital, Dell Seton Medical Center at UT, will open May 21, 2017. See also Texas Health Catalyst. Thanks to Allison Vaughn, who provided feedback and suggested revisions to this post.