Kevin A. Clauson, Pharm.D. is an associate professor at the College of Pharmacy and adjunct associate professor at the College of Medicine – Biomedical Informatics Program at Nova Southeastern University in Fort Lauderdale,  FL.  He teaches a course on Consumer Health Informatics and Web 2.0 in Healthcare and blogs and conducts research about related topics. Kevin can be reached via Twitter @kevinclauson.

A lull in the pharmacy conference season is giving me an opportunity to look back and reflect on how many audiences were receptive to exploring roles of social media in healthcare.  However, a similarly consistent observation from my presentations was how tough of a sell participatory medicine seemed to be. 

The same crowds and individuals who were willing to incorporate unorthodox channels of communication and engagement (i.e., Web 2.0), appeared largely unwilling to give the participatory medicine model a chance.

The upside is that this resistance did help stimulate several interesting conversations.

Many of these conferences were attended by pharmacists in clinical settings.  I think the suspension of disbelief and leap to social media was easier for them to make once they saw that the Centers for Disease Control and Prevention, Department of Defense, and hundreds of hospitals were already employing these technologies.  This held true even though there is not much in the peer-reviewed literature actually establishing the benefits of doing so.  Hence, it is a little ironic that the same shortcoming (i.e., lack of an established model with supporting evidence) is what held up many regarding adoption of a participatory medicine model, or even a subset like shared decision making.

In total, three major types of barriers emerged from speaking with healthcare professionals and students: level of commitment required, confidence in patient capacity, and absence of evidence.

Level of commitment
One attendee summarized her reservations as, “You can dip your foot into the pool with social media, but you have to dive into participatory medicine.  It’s like being willing to listen to a new song versus trying to play a whole new musical genre.”  The perception was that adopting a collaborative approach would have to be a top down implementation.  When pressed on the topic, some practitioners admitted they were afraid that a negative impact on patient outcomes from this approach would result in their patient ‘partner’ or family taking legal action since it was so far outside the standard of care they knew.  Even pharmacists open to the idea felt they should receive some type of training first, but weren’t sure how to pursue it.  Pharmacists in the community setting, in particular, expressed that without corporate approval and protection that their hands were tied from workload and infrastructure perspectives.

Confidence in patient capacity
While it may be an entertaining show, examples like this House episode highlighting difficulties with patient capacity and compliance probably aren’t helping those pharmacists on the fence about participatory medicine.  I suspect almost all of us who have been in practice have encountered the occasional patient of this type.  A common refrain I heard was, “we can’t even get patients to take their meds now.  How are they supposed to be responsible as a partner in their healthcare?”  Pharmacy is as grounded as any healthcare profession in the paternalistic mindset.  Even as it has evolved into producing pharmacotherapeutic experts with roles including patient advocacy, the advocating itself has retained a paternalistic framework.

Absence of evidence
One of the most damning reasons clinicians cited for avoiding adoption of participatory medicine is that there is virtually no published research demonstrating that it has a positive effect on key outcomes.  Ironically, many of these same people were absolutely willing to commit the time and resources (even before it was mandated) to implementing traditional informatics tools – despite a frequent lack of evidence in that arena.  New “cutting edge” technology is simply an easier sell than equipping a patient with the tools they need to be empowered, engaged, etc. and trusting them to shoulder a burden of responsibility.

Optimism looking ahead
It was encouraging that at some meetings, attendees took on the role of flag bearer for participatory medicine.  For instance, it was pointed out that there is a fair amount of research on the shared decision making process piece.  It has shown promise in improving the quality of interactions and patient satisfaction.  Alternately, it was acknowledged that a positive impact on outcomes like compliance in studies and Cochrane Reviews is unclear at best.  Questions were also asked about the root cause of compliance issues and others urged examination of potentially flawed assumptions about patient capacity.  There has even been work specifically investigating patient involvement despite lower literacy. It was universally recognized that some patients simply don’t want to be active and engaged; they prefer more traditional, passive roles.

In many of my lectures in the College of Pharmacy, I use an audience response system.  I have found it can be a good tool to assess baseline knowledge, assess comprehension of a concept and generate discussion – which can be difficult in a class of 200.  This week I posed the question in a class of first year pharmacy students, “What is your opinion of the participatory medicine model?”  Students pressed the corresponding number on their clicker and their responses were aggregated from all three campuses.  Choices (and corresponding student responses) were:

1. Will result in improved outcomes if patients are partners in their health (57%)
2. Will only work for affluent and highly educated patients (25%)
3. Depends more on the specific pharmacist than the patient to determine if it will work (13%)

4. Will never work; patients don’t even take their medications correctly as it is (5%)

The student responses were encouraging and led to some insightful questions and comments.  One thing I do to try and foster their inquisitiveness is to include a slide citing the Society for Participatory Medicine and highlight the accompanying Journal.  For many of the groups I address, I think these are two important steps.  The creation of the Journal was especially critical as there are a fair amount of people who won’t even consider something until it appears in a traditional peer-reviewed venue.  Similarly, one of the quotes that really resonates with people is: “As opposed to the doctor-centric, curative model of the past, the future is going to be patient-centered and proactive.”  The weight given to the statement is not so much due to the words themselves as the fact that they were spoken by then Director of the National Institutes of Health (NIH), Dr. Elias A. Zerhouni.

Overall, there was a lot of doubt expressed about participatory medicine.  However, most pharmacists are analytical by nature, have strong critical thinking skills, and a desire to help improve patient outcomes.  Based on those qualities, increased awareness and an emerging body of research in this area, I think more pharmacists will be embracing the best components of this model.