Government needs to do more to engage patients in policymaking

CryerHealth has been privileged to have on board a team of brilliant hardworking interns from MPH programs around the world who contribute much to our efforts to create patient-centric solutions.  Here is an insight into one assignment:

I was recently tasked with an attempt to find opportunities for patients to act as policy makers and committee members at a governmental level.  This is an important and critical area because patients and their family members bring unique perspectives to government committees.  They provide personal experiences with or possess knowledge pertaining to specific illnesses and conditions.

At USAJobs, a database of federal vacancies, I discovered policy analyst positions at Health and Human Services.  Unfortunately, positions required pervious experience and employment in the federal government.  This is not really suitable for most patients and for those rare patients who do wish to look; this database is not easily navigated.  It is clear that USAJobs has postings for paying jobs as opposed to vacancies for membership on government committees.  It is a resource for those hoping to find governmental employment.

The Food and Drug Administration does have a FDA Patient Representative Program.  Patient representatives for the FDA are responsible for providing advisory committees with their particular and unique opinion and perspective.  They are able to serve on advisory committees when a product or therapy is under review.

I looked through a series of government entities for patient opportunities on committees to serve as patient advocates but had little luck.  I searched through the following:

1)    National Advisory Council for Healthcare Research and Quality
2)    U.S. Department of Health and Human Services
3)    The Agency for Healthcare Research and Quality (AHRQ)
4)    Patient Centered Outcomes Research Institute (PCOCRI)
5)    The National Institutes of Health (NIH)
6)    The Centers for Disease Control (CDC)
7)    The Institute of Medicine (IOM)

From my search I have discovered that there are not many committee openings for patients to become involved as patient advocates.  There are plenty of job openings or positions for clinicians, physicians, policy makers and analyst but none for advocacy from patients.  Navigation at government websites was also very difficult and tedious.  Expanding my search to consumer advocacy did manage to yield a few more results but even that was not very promising.

There is a clear disconnect between patients who wish to serve as patient advocates and interest or awareness from these government committees.  Sadly a huge opportunity is completely overlooked if patients cannot serve on these committees.  As e-health and patient advocacy expands in importance, there must be more opportunity from government agencies to seek the input of patients.  Accessibility and opportunity must be improved so that HHS can improve patient e-health and health IT, as these are their new agenda items.  Patients are a specific group that have a uniquely and irreplaceable experience that encompasses a particular and key perspective of patient care.  Without tapping into this demographic, a government committee loses this voice and does future patients and projects a disservice.  It is also high imperative that patients are not lumped into the group with consumer advocates.  Consumers include those who consume and use products used to treat patients, this does not necessarily represent those who are experiencing a condition or disease first hand but rather a group that has a monetary incentive in future policies.  The goals and vision of all consumer advocates does not completely match those of patient advocates, patients are not always put first with consumer advocates.

In order to improve patient advocacy, more patient spots on committees are a necessity.  From my search it is evident that only the FDA has made a legitimate attempt to seek input from patients and provide a way for this key demographic to voice their concerns, thoughts and ideas.  Patient committee members are able to put their own experiences and their voice forward to committees.  They are able to invoke an emotional and personal understanding with other committee members and have a direct impact on key decisions and policies.  Medicine and patient advocacy must not become a clinical experience where marketing and cost are the focus.  Without representation, biased and skewed decisions will stem from these committees and only patients will suffer.

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