Health Consumer Research
Dynamic changes taking place in healthcare are demanding that doctors provide more wellness at a lower cost or be paid less so that the services they provide are based on the resulting value of the care. It is up to the patient to evaluate the care they receive, co-manage decisions and expectations, and be actively engaged lifestyle changes when needed. New technology solutions are emerging every day: Portals that connect patients with their care team; over 50,000 apps that do everything from motivate exercise to voice recognition on cell phones to uncover mental health problems; condition education and online communities; and electronic check in that assess some problems prior to meeting with the doctor. Are they helping, or are people getting burned out on all of the experimentation?
No one is consistently asking people about their needs, expectations, experiences, technology preferences, and how they process information and make decisions. This is especially important at a time of great change because as people adapt, or not, there will be corresponding changes in proficiency and involvement that will create new demand. I Am Heard is the Gravitas consumer health research awareness and funding campaign that will consistently collect the largest compilation of self-reported patient data on: how they make health decisions; what information they depend on; what problems they have experienced that required multiple doctor visits to solve; what they need their doctors to explain or talk to them about; what perceptions they have about their illness; what their expectations and health goals are; who they trust in doctors' offices to help them; whether they think they need or will use referrals; what kinds of technology they use more often; what they think of new ideas and products that are available; and what the communication with their doctors should focus on.
The research will be conducted online, at public events and locations using tablets, in health facility lobbies, on college campuses, door-to-door in rural areas, and anywhere else we can put short surveys in front of people. Our reach will be dependent on the funding we receive from donors that hear about the program across all media outlets. The results of this research will be used to build patient profiles using small, like populations within the larger, national whole. These profiles will support the development of patient models that help doctors match treatments to the patients preferred technology and care support. This research will also be combined with our disease profiles and medical research programs so that the totality of our work provides comprehensive care models from disease identification to self-management in order to reduce the severity and longevity of illness.
The Right Connections
The primary connections required to create wellness are the relationship between the doctor and their patient or family members, the relationship between different physiologic systems that may be compromised, the connection of people with information using technology that is replacing personal conversation, and the portals between need and access to services. The common denominator is the individual patient. The younger the patient, the greater demand on technology. The older the patient, the greater demand on medical expertise, no matter where it is found. Listening to people to align theirs needs with their health services is the fastest path forward.
Making the Right Decisions
For the past century, almost every chronic condition, such as heart disease and COPD, in addition to life threatening illness such as cancer or stroke have continued to rise and are expected to for the next 30 years or more. No matter what cajoling doctors and health providers do, people make bad decisions. But, ironically, the decisions people have to make to relieve the fiscal and physical burdens caused by these conditions is made by a population of which over 50 percent have depression, about 30 percent average have dementia, Alzheimer's or dementia-like conditions, and about four-percent have had a stroke or a Traumatic Brain Injury (TBI). It seems a little crazy or stupid not to consider a healthy brain to be a big part of the wellness equation.
Deming is often quoted, “you can’t manage what you can’t measure”. Nowhere is this more forgotten than in the expectations of how individuals are to become co-managers in their health. Conversely, when people are given assessments that show them the severity of their condition and help manage whether medications are effective or can be discontinued, the relationship with their doctor and their active participation is vastly improved. When the brain is impacted by a condition or its treatment, such as “Chemo Brain”, baseline measurements prior to treatment and ongoing assessment that patient can do on their own and report, supports the scientific research that is needed to formulate solutions.
When people have chronic or life threatening conditions - reducing the burden of illness becomes the highest priority. Without insight into the persons health objectives, intervention preferences, or whether or not they can synthesize the information they are given, expectations of adherence or follow-through go from the sublime to the ridiculous. Depression or anxiety is a good example. Doctors think patients need on-the-spot counselling and that it’s an emotional response to illness, not a physiologic. People think that it is worse than it is and that they will have to be on medication forever. Better management of expectations is diagnosing it as would be done for an infection caused by weakened immune systems, measuring its severity to know the expected length of care, and discontinuing medication when it is gone. Providers and technology developers are eager to design solutions, but first they need the guidance of science and the patients response to it so that the technology is a part of the solution and not misguided activity.