Patti Brennan: We need new policies for a new era of patient-centered care

WendySwanberg, Project HealthDesign Communications Project Assistant

Last week, national program director Patti Brennan held a briefing in Washington, DC, to speak with policy makers about the many insights that have emerged from the work of Project HealthDesign. While it's nearly impossible to summarize the findings of a project that's been evolving for nearly a decade, Patti does a beautiful job in this brief video.

We're at an important juncture in the future of healthcare and health technology, and a critical point for policymakers to attend to the knowledge gained by in-depth research like that conducted by Project HealthDesign's project teams.  Patti stresses four key considerations:

• The EHR is not enough

• We need safe and trustable ways to manage clinically-generated data and patient-generated data

• We need practice-permissive policies that support the use of patient-generated data and enable inter-visit care actions

• We need to expand the concepts of confidentiality and privacy to better fit the data landscape

These ideas have been germinated over the Project's duration, and we've chronicled much of their history on our website. In the months ahead,we invite you to explore the rich content on our website, and to keep the conversation going!

 

 

Maintaining the Patient Perspective in Patient-Centered Outcomes

Sara Koliner, Policy Analysis Project Assistant, Project HealthDesign National Program Office

Last week, the Patient-Centered Outcomes Research Institute (PCORI) approved 51 awards as part of its second cycle of funding in support of the development of a National Patient-Centered Clinical Research Network, part of the “Accelerating Patient-Centered and Methodological Research” Priority for Research.

Studies in Comparative Effectiveness Research (CER) rely on dense and nuanced information in order to accurately assess the quality of one treatment over another. The studies approved by PCORI, especially those concerning the assessment of prevention, diagnosis, and treatment options, cannot rely on coarse measurements such as mortality rates or a running list of potential side effects to inform medical providers and policymakers about the quality of life lived by treated patients. Instead, studies such as this could benefit from the real-time collection of the patient’s observations during treatment — information that Observations of Daily Living (ODLs) readily provide.

For example, a PCORI-funded University of Pennsylvania study has proposed to investigate the comparative effectiveness between two treatments for inflammatory bowel diseases, including Crohn’s disease. In order to quantify patient preferences for relevant treatment outcomes, a discrete choice experiment will be implemented using known attributes (e.g. the risk of serious infection, treatment failure requiring surgery, etc.). While these attributes of a treatment are important to informed decision making, they do not capture the entirety of patient-preference, especially with regard to unpredicted effects experienced during treatment.

The Project HealthDesign team, Chronology.MD, also focused on individuals with Crohn’s disease, but with the focus on their experiences during the study, rather than just the clinical outcomes. By giving patients a way to self-monitor through the collection of ODLs, the team made an enlightening observation (discussed in a blog post last year):

“Overall, the ODLs that the patients felt were the most personally relevant to track were (in order of most frequently cited): abdominal pain, weight, energy, journal, stress, daily activity, medications, sleep, lab tests, and trigger foods. […]Patients in the 25-34 years age group were more likely to report abdominal pain and weight as the two most relevant ODLs for them to share with their providers; patients in the 35-44 age group reported that the journal and abdominal pain were most relevant to share; and patients in the 45-54 age group unanimously reported stress and energy as the two most relevant ODLs to share with their providers.”

We already know that patient-defined, patient-generated ODLs provide incomparable insight into a person’s health experiences on the individual scale—but that’s only half the story. The translation of these personal cues into values that can be compiled, cross-listed, and categorized brings patient-level data to the scale of a population. Through the amalgamation of individual-level data, the Chronology.MD team could see that a 30-year-old patient with Crohn’s Disease may prioritize weight over stress as an indication of health, while a 50-year-old may more likely do the opposite. When attempting to assess the effect of a treatment—especially in terms of quality of life—researchers must take these (in this case, age-related) preferences into account. Patient-centered outcomes rely on the perspectives, vocabularies, and concerns of real patients, not just the outcomes that clinicians are concerned about.

As we wrap up our eight year project and look to the future, it is important to also stress how much value remains to be produced by ODLs in the research agenda of patient-centered outcomes. Mobile technology and application software have never been more ready to be utilized by those working outside the confines of the traditional clinical research lab, and we are excited to see how patient-defined, patient-generated data illuminates the Comparative Effectiveness Research field.

Changing Health Paradigms: A personal perspective

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.