Fresh out of Health Datapalooza, Janae Sharp explores how the conference circuit shows what’s wrong with healthcare — and how we might fix it.
Last week, I had the pleasure of attending Health Datapalooza in Washington, D.C., a conference that brings together academic medicine, policymakers and healthcare leaders to have meaningful discussions about healthcare data. Since then, I’ve been thinking about the messages I consistently hear about revamping healthcare. About “disruption” and “transformation.” All the narratives leave me wondering:
Do we need to fix the data or start over? Are these conversations about healthcare even relevant?
We spend a lot of time talking about how broken the system is. The billing is broken. The physicians are broken. The conferences are an echo chamber. The health record systems don’t listen to users. The tech companies just want to make money. The conferences just want money.
And to remain relevant, conferences are incredibly motivated to provide great business opportunities.
That said, I asked a few attendees of Datapalooza what they thought they might gain from the conference, and they all said that attending was an invaluable experience. Benjamin Zaniello, M.D., MPH, of the health data startup Collective Medical, talked about the learning opportunities he participated in at the event.
“I like that it feels like a safe space for government employees to learn, discuss and inform, and that helps me gain perspective on their interests and potential opportunities,” he said. “From hallway insights on the new ONC regulations to Ron Wyden’s speech on freeing patient data, I came away with a better grasp of what I should be working on, particularly in care collaboration and better ways to approach it.”
Collaboration is imperative for healthcare. But how helpful are any of these entities to improving the state of healthcare? What relevant work are they doing? If healthcare keeps trying to revamp itself with new regulations and ideas only to discard each new idea after billions of dollars have been spent, how will it stay relevant?
I spoke with Nicole Fisher, president of Health and Human Rights Strategies, who mentioned that many of the studies we run have one primary investigator and cannot be reproduced. How are these studies producing relevant data? For instance, physicians want to be involved when a program is developed to reduce their experience of “burnout” or “moral injury.” They want to redefine solutions and the problem — maybe do a new study. Every health IT company needs validated results, and “death by trial” for startups is equal to “death by study” for progress in improving workforce happiness. Healthcare stakeholders, meanwhile, only want to consider a data-backed solution. Everyone wants to figure out the magic drug, but no one wants to admit that most of the healing happens outside the healthcare system. This applies both to physician burnout and most healthcare IT solutions. The system is trying to fix itself using the same methodology that is not working.
Healthcare is losing control of itself and its primary objective: health.
When my husband was studying public health, he was told that one of the most successful needle exchange programs in Philadelphia was part of a bagel breakfast. They understood the motivations of the people who needed an exchange program. People who needed new needles also wondered about their next meal. I looked at Prevention Point Philadelphia, and one of the things they’ve done to succeed in reducing opioid overdoses and disease was to provide for the basic needs of homeless people. If you don’t have an address, you cannot get aid, and when you understand the basic needs and the motivation behind treatment, you can save lives.
I remember when CNBC health and tech reporter Christina Farr wrote about how much time she spent on her Instagram account. Healthcare, meanwhile, is stuck on shiny tech without understanding why we spend so much time on the shiny tech, when we need to be looking at more down-to-earth, non-industry types of data. Instagram is more interesting than a patient chart. Is it possible to make health tech into technology we actually want to use outside research?
One of the best motivational fitness trackers of this decade was a game called “Pokémon Go.” Hotels can track what type of pillows you want before you arrive, leading to useful data about chronic pain and sleep problems. Talent from gaming and casinos industry will help the healthcare industry understand concepts like motivation and brand loyalty.
As Sunny Tara, CEO of CareCognitics, said, “Actionable data is not enough. We need data that motivates action and commitment. We have the ability to understand what exact point a patient needs to motivate them to make good choices. Healthcare should reward each person based on their motivations and use data science to know exactly what they need. Technology is great at tracking custom needs of large populations.”
The narrative about how broken the system is, and what we need to fix, also needs to recognize that there is competition. Natural medicine is gaining traction, and for a reason. All the physicians who complain about Dr. Oz don’t seem to be cognizant of the connection between his popularity and the failures they themselves are reporting in traditional health systems. They need to understand that just because vaccines are “good for you” does not mean it is not enough to convince patients to use them. Even the notion that healthcare is saving lives is no longer enough to ensure loyalty or trust. We need to understand the motivation and needs of the whole person, not just test results.
At Health Datapalooza, Karen DeSalvo, M.D., spoke about her experience as New Orleans’ commissioner of health. At first, she anticipated heart disease being a key driver of health in the city. But her colleagues cited violence. Healthcare is only beginning to integrate what public health has known for a long time: Your quality of life is based on factors outside your cholesterol level. Healthcare IT and data need to know what is most important for different parts of your life, but they also need to know your motivation.
For me, it is a difficult balance. I enjoy healthcare conferences, but I do not enjoy wasting time. I wonder how much difference we could make for poverty-stricken patients and areas with the money we spend on attending conferences. I like healthcare startups, but I think the matchmaking system between problems and solutions needs to be improved. Healthcare events need to understand how to drive business, rather than simply offering cheap wine at a cocktail hour.
The narratives of Health 1.0 and beyond seem to indicate the system is breaking down in part due to its own failure to compete with the snake oil of a company like Goop. We want to believe a jade egg has magical powers. We want the peace of mind of a system that will work for us and maximize our potential.
The self-perpetuating research cycle needs to break out of its comfort zone and ask itself how it can continuously demand respect when it is so clearly failing to serve its constituents. Until we base data decision making on what actually drives better behavior, we will fail.
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