Linda Brei, Project HealthDesign Communications Consultant
In the late 1970s I had my first experience working for a health care related grant with the Community Care Organization (CCO) project, funded by the Kellogg Foundation. Wisconsin was one of five states selected to demonstrate how Title 19 dollars could be used to pay for in-home care vs. nursing homes for rehabilitation services. Eventually the results of these demonstrations found their way into public policy decisions and helped to change contemporary thinking about the value of delivering health care to patients in their homes.
Moving forward thirty years, I found myself working for another program, this one funded by The Robert Wood Johnson Foundation, that has the potential to support an even greater paradigm shift in our thinking about patient care in non-clinical settings. Project Health Design began with the goal of creating a vision of how Personal Health Records (PHRs) could become a valuable tool to facilitate patient-clinician communications. By the close of Project HealthDesign’s first grantee projects, the Program had created intriguing visions of how individual patients could use electronic devices to capture and share health information with their clinicians. As the project teams looked at what data could be valuable to clinicians, the concept of using Observations of Daily Living - patient generated, recorded and often interpreted data - emerged. This simple concept – that individuals can become active participants in managing their own health if they identify and then pay attention to cues from their daily lives – can be transforming. These observations can be used by the individuals alone or shared with a clinician, care giver or even family member in a team effort manage the individual’s health.
For me personally, the idea of ODLs was affirming and empowering. I am a migraine sufferer. Thinking I could perhaps avoid migraines if I could find what triggers them, I kept food diaries and looked at hormonal cycles with the hope of finding the root cause and mitigating if not completely avoiding a headache. Had my simple attempt at finding a cause for my headaches worked, a clinician would probably have believed my primitive research and pursued some sort of treatment. But, this wasn’t the case. When I was assigned to write about ODLs, it occurred to me I might try to identify cues rather than causes and then take preventive action. This helped me uncover an elusive, personal and complex set of warning signs to which I could pay attention and act upon.
What Project HealthDesign brings to me and hopefully to the greater effort of managing health vs. curing illness is a sense that health is complex and nuanced. It is individual and terribly personal. No physician, however skilled, will know what trips my triggers unless I have a way to tell her; tests and exams only talk about a snapshot in time. But a skilled clinician in tandem with a very good set of ODL’s and an engaged patient offers something much more promising. And what that combination seems to promise is fewer unnecessary drugs, fewer emergency calls, more personal responsibility, less expense, more targeted treatments and more prevention.
Unfortunately, we are moving way too slowly. There are a multitude of “complexities” around privacy and technology issues, and about how clinicians can recover their facilities costs if they replace a clinic visit with a quick ODL review and text message. The public debates around policy doctrines such as Meaningful Use have been ongoing for years. Project HealthDesign, among others, has provided thoughtful direction about privacy and other policy concerns. The nation is at a crossroads about how to deliver good healthcare at reasonable costs, and we have tools that promise to deliver a good chunk of that. It seems to me we need to begin to bring these tools to the public, realizing that any system of controls will only be perfected through, ironically, using it meaningfully. So, let’s just do it!
Linda Brei is an independent communications and marketing consultant. Through her firm, Kalliope, LLC, Linda works with businesses and non-profits, particularly in the areas of science and medicine.