Calling for Problems: What Did We Hear? What’s Next?

Jan 24, 2013, 11:30 AM, Posted by Brian C. Quinn

Brian Quinn Brian Quinn, assistant vice president, Research and Evaluation

In December, we asked our readers to tell us about the health care problems they felt were most in need of innovation—the tough problems, the crucial ones, maybe even those they’d seen firsthand. The number of comments we received was encouraging. It has also challenged our thinking, and generated a great deal of discussion on our team.

One thing is certain: The conversation that ensued from that post confirmed that our team needs to do more listening—listening to patients, caregivers, health care professionals, innovators, thought leaders—the list goes on and on.

We saw some common themes in the problems you shared. A few of them are reflected in areas in which the Robert Wood Johnson Foundation is already working. Clearly there are problems that, despite the intensive efforts of many really smart people, resist conventional solutions. Other themes showed us how important it is to always be examining what we’re doing from perspectives other than our own. 

So where do we go from here?  

We thought it might first be helpful to summarize some of what we heard, and share our thoughts, as well. Then, we’d like to invite you to continue the conversation.

Do you have an innovative solution designed to address some of these problems (or do you know someone who does)? Take some time to learn more about Pioneer’s grantmaking strategy—and if you think you have an idea that is a fit for us, learn how to submit a brief proposal to our team.

Do you see a problem in health and health care that wasn’t raised here? Let’s hear it. Feel free to comment below. Or, if you’d like a more direct dialogue with our team, please email us at pioneerportfolio@rwjf.org.

What we heard

Prevention continues to be a concern

“How do we really motivate folks to make and maintain changes to their lifestyles…?” asked one reader.

While choices alone do not determine a patient’s health status, we know that the choices people make drive their health—or lack thereof. “‘Behavioral’ consumers have an especially hard time coping with or even thinking about rare (for them) events of high consequence,” added another commenter.

How do we make the healthier choices easier for people? How do we persuade folks to make short-term decisions about their behavior (for instance, wearing a helmet while biking) that have long-term positive consequences for their health and well-being?

That’s why Pioneer has invested in the field behavioral economics—essentially, the science of why people do what they do—but that is only one way of chipping away at this long-standing question: How do we do a better of preventing, rather than treating, illness and injury?

Our aging population will soon face a multitude of challenges

There’s almost unanimous acknowledgement that our nation is unprepared for the baby boomers as they enter the ranks of the old and the very old. Comments reflected a variety of concerns related to aging—for instance:

  • The relationship of traumatic events to dementia and depression in old age: “It is very rare that the caregivers who work with older adults are equipped with training on how to recognize and respond to trauma.”
  • The financial consequences of diseases often associated with aging: “How many baby boomers, with the epidemic increases in dementia/Alzheimer's, aren't even aware of what is at stake for them financially when this happens? The public needs to know!”
  • The end of life: “One has to wonder whether two decades of litigation and legislation to create advanced health care directives and durable powers of attorney have been worthwhile.”

Pioneer has just begun to “dabble” in this area with the Senior Independent Living Research Network Initiative (SNI). The vision for SNI is to create a living-research lab with as many as 10,000 independent-living seniors. After wiring independent-living seniors’ homes with sensors, researchers will be able to explore fundamental questions about their health, behavior, and activity—and to use the network to evaluate the efficacy of care models, services, and products.

Health care needs more early risk-takers

“In the parlance of the venture capital world, we need angel investors in community transformation, but the richest sources of funds—foundations and government—are all late-stage investors,” commented one reader. That’s one of the reasons the Robert Wood Johnson Foundation created the Pioneer Portfolio nearly a decade ago—to be able to take more risk when it comes to funding health care innovations. We know, however, that we still have much to learn.

Health care providers and delivery systems need to better integrate care

While health care providers generally acknowledge that continuity of care—and communication—is essential to patient well-being and safety, health care’s fragmented systems throw up many obstacles.

“I often think that if our health care, social service, criminal justice, community groups, and other agencies collaborated better, we would see improved results in the lives of underserved and vulnerable populations,” said one reader. Another commented on the overuse of emergency medical transportation and emergency care: “We need to find ways for EMS systems to collaborate with others…to determine alternative sites to transport patients to.”

We need to examine our health care culture

Several readers highlighted the role social determinants play in health. “One of the reasons why innovating for health care is so hard is because current solutions to health care rarely take into account that the issues we face in health care are not necessarily health care’s alone,” commented one.

Others commented on the difficulties of being treated for a rare or difficult-to-diagnose disease in the current health care delivery system, including a lack of information and patient databases. “Instead of welcoming those whose symptoms are uncommon as means of learning more about the human body, the medical community is anxious to be done with us and sometimes implies that our problems are psychological.”

Finally, as medical education costs skyrocket and technology continues to improve exponentially, one reader called for in a radical change in medical education: “Where is the Khan University for health professional schools?” The good news: Pioneer is, indeed, funding Khan Academy to pilot and demonstrate proof of concept for a new model of online medical education. With this initiative, Khan hopes to build a robust library of online medical education content to support medical education for both medical trainees and lay people. The pilot will be conducted in conjunction with Stanford University.

How do we empower patients to become active partners in their care?

Let there be no mistake: In this digital age, patients are taking charge of their care. A recent Pew Internet study determined that more than half of adults have looked for health care information online in the past year; more than a third have gone online in an attempt to self-diagnose. How do health care providers validate those efforts and yet ensure patients are getting the right information? Furthermore, how do we level the proverbial playing field between health care providers and their patients?

Two-way communication was a common theme. “Should medical professionals recommend starting a blog to a newly diagnosed patient? Should researchers learn from patients’ narratives even though this is very different than qualified self or big data?” one reader asked. “How do we go about creating/evolving/maintaining an effective framework and apparatus for easy, confidential sharing of health information among me, loved ones, clinicians, and others who contribute to my health,” asked another.

As Pioneer moves forward with established projects such as OpenNotes and Project HealthDesign, we will also continue to examine the role of the patient, how it is changing, and how that role can improve the quality of care patients receive.

Advances in medicine and medical technology are both a gift and curse

One message was clear: technology tools and the ever-ubiquitous “app” can help us make the most of scarce resources in health care, but are we taking advantage of all they offer? “As we move into eras with mHealth, can we engage these groups who have personal commitment to helping their communities and leverage their disparate efforts?” asked one commenter.

Exponential advances in medicine have also created their own set of problems.  “We have this strange paradox in emergency/trauma care. Our breakthroughs in emergency care have helped reduce mortality rates from shootings in our cities. And yet, many of the victims are from working poor situations and do not have private health insurance. As such, victims are saved by surgeons, but often have long-term chronic injuries and pain that go untreated by the formal health care system.”

We need to pay more attention to all aspects of mental health

It is no coincidence that readers noted breakdowns in the delivery of mental health care; our post went live the day of the tragic shootings in Newtown, Conn. One reader, specifically, noted the need for better quantitative measurement: “We have these measures for various physical ailments (e.g., osteoporosis, heart disease, COPD, etc.), why not mental illnesses?”

Thanks to those of you who responded; we are pleased that so many of you shared your thoughts, ideas, and worries. Do you have more thoughts? What have we missed? What innovative solutions are out there? You can let us know by: