Why is participatory medicine such a tough sell?

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.


Posted in: research issues | trends & principles | Why PM





28 Responses to “Why is participatory medicine such a tough sell?”

  1. Susannah Fox says:

    Thanks, Kevin, for giving us this report from the front lines. It sparked a few realizations:

    First, we talk quite a bit about health professionals on this blog, which encompasses all disciplines, but we so often end up focusing on MDs (and to a lesser degree RNs, midwives, etc). Pharmacists are in the community to an even greater degree, advising people on how to treat their symptoms & conditions.

    Second, pharmacists turn out to be just as focused on evidence (and dare I say they are as conservative) as other health professionals we have heard from. “Prove it” seems to be a universal challenge.

    Third, it seems that it is easier to take on new ways of communicating (ie, “sure, I’ll try Twitter”) since social media seems to have a lower bar and lower stakes. It is much harder to take on new practices altogether. I’d like to hear more about what participatory medicine means exactly for a pharmacist. What is the vision and how is it different from the usual practice?

  2. Dyck Dewid says:

    The question, Why is PM a tough sell? seems to discard significance of the most important person– the patient.

    It is not useful that the patient “doesn’t want to” or “wants to remain passive”. The question is what is driving this behavior?

    My experience is the ‘Real’ reasons for resistance to PM (everyone being patients) is the same. The main reason: Fear. The additional reason for HC Practitioners is ‘Greed’ and ‘Job Security’ (having significant investment in training and experience w mainstream allopathic protocols & dogma).

    Getting underneath the issues of Fear, Insecurity, Greed like other human frailties, is difficult because we all seem possessed w them.

    But, even if we don’t understand how to measure or confirm our hypotheses we can see causal relationships that enhance or retard these attributes.

    One obvious example is ‘Consequences’. When not tampered with, consequences affect one’s behavior in dramatic ways. Sometimes it takes a long time and much suffering before the learning and change is effected. That is one reason tampering is common and comes in many forms- we don’t want to suffer or see others suffering. But, tampering obscures or eliminates consequences and its teaching and useful growth doesn’t take place… and the suffering continues.

    So, many of us limit our own growth in our brief lifetimes. And for some of us our job seems to be to stimulate and foster others’ growth. This is altogether natural since we are connected and we affect each others choices and decisions and attitudes and earth and community and ‘norms’.

    So, in my opinion the natural thing to do regarding PM is to educate the public to what we think we know. And, as your article implies the professionals and practitioners can positively influence this education only if they understand and accept the premise of PM for themselves. And otherwise would be a negative influence.

    However, there is also a danger in that PM can evolve in a diluted and limited way because we insist that it conform to rules of allopathic medicine and science. And in my opinion that would damage an otherwise rather eloquent and natural construct.

    • Kevin Clauson says:


      Your point about fear is well-taken. I included it under the level of commitment subheading and it may be just another expression of litigation-driven practice or defensive medicine. Also, education and awareness are key for letting the public (and practitioners) grasp the PM model and their possible roles. That is why I think it is so important to have concerted individual and Societal efforts in this area. The one major point I would disagree with is that every patient wants to (or would want to) embrace the PM model. It may be that the majority of patients want a stronger voice, but I firmly believe that not all patients desire this.

  3. @KevinClauson post on e-patients.net: Three barriers he's found to Participatory Medicine http://is.gd/aSJFq

  4. Thank You Kevin!

    Your post successfully makes the point I have been trying to make for a while.

    Participatory medicine is not the Patient vs. Docs story that some would like to portray.

    It is a deep evolution of the concept of medicine resulting from the ever growing network effect on all aspects of society. My friend Tom foresaw that impact and created the famous inverted pyramid to explain the shift from Industrial Age Medicine to Information Age Medicine. See Steal These Slides

    It is fascinating to see that PharmDs have an attitude as paternalistic as many members of the health allied professions. This incredibly paternalistic vision of human beings ability to confront and deal with the most personal issues cannot be separated from the climate in which health care reform has been discussed. The pharmacists myopia is one more example why effective reform cannot come from within that system, since all those who derive income from their participation in the system run the risk of lowered income if their end-customers become educated and understand the depth of the most expansive scam of all times.

    • Kevin Clauson says:


      Ironically, some of the otherwise positive changes in pharmacy/medical education (e.g., inclusion of pharmacists in multi-disciplinary rounding teams) may actually increase the likelihood that pharmacists develop a paternalistic viewpoint. One significant piece to the training is modelling behavior – and chances are that pharmacy students, pharmacy residents, and new pharmacists are going to mimic and adopt what they see during rounds…most of the time that is the established, conservative, and paternalistic approach.

  5. It is way too early in the game to bemoan the “uptake” of participatory medicine. Here are my thoughts on the subject.

    1) Historical nature of the modern physician-patient relationship – Since the early 1900s medicine and the physician-patient relationship has been predicated on the scientific model wherein the doctor was the expert and the patient the passive recipient of the doctor’s wisdom. More recently this model of physician-patient relationship has come to be referred to as the bio-medical or paternalistic model of care.

    The premise of paternalism is that patients should reasonably expect the doctor to do what is in the best interest of the patient. As such, patient questions or patient lists (of problems) were tacitly, if not actively discouraged. I kid you not about the “La maladie du petite papier” which as recently as 1985 suggested that “bringing lists” into the doctor “was almost a sure sign of (patient) psychoneurosis.”

    The point – just as it is hard to change patient behavior, so to it is hard to change ingrained provider behavior. For participatory medicine to work…both physician and patient behavior need to change and that will take time.

    2) Terminology – participatory medicine, patient centered care, medical home, primary care redesign…what’s the difference to the provider or patient? I get confused. There’s an amazing piece of research done by Kaiser Permenante that looked at the first thing that came to the of consumers when they heard the term “medical home.” Not surprisingly consumers tended to associate medical homes with end of life care. No wonder it can be a hard sell…many consumers don’t relate to it. It should not be suprising that providers used to running a benign autocracy may not relate well to the word “participatory.”

    3) Dependency upon Health IT – Let’s face it. EMRs and patient-centered care (and presumably participatory medicine)are inextricably linked. The belief seems to be that you can’t do one without the other. It follows then that the uptake in participatory medicine depends up the adoption of EMRs by physicians which as we know has been very slow.

    I think once we get the average patient into the conversation, (not just the expert patients found here) that we will start to see things change in a big way.

  6. SusannahFox says:

    New on e-patients.net: Why is participatory medicine such a tough sell? by @kevinclauson http://bit.ly/b55VFr #WhyPM #hcsm

  7. SusannahFox says:

    Pharmacists open to social media rejected participatory medicine, saw it as "dip a toe" vs. "dive in" http://bit.ly/b55VFr

  8. RT @SusannahFox: Pharmacists open to social media rejected participatory medicine, saw it as "dip a toe" vs. "dive in" http://bit.ly/b55VFr

  9. SusannahFox says:

    Good question: RT @DyckDyck Now that #HCR passed is there any wind left in Participatory Medicine? I HOPE SO. #whypm http://bit.ly/b55VFr

  10. KentBottles says:

    RT @leonardkish

    Why is participatory medicine such a tough sell? http://is.gd/aSGU9 #whypm

  11. Leonard Kish says:

    I’m a little stunned that there hasn’t been more evidence, particularly with new 2-way communications channels that seem to fit the model of participatory medicine. One example, Kaiser’s Cardiac Care Unit, reduced mortalities by 70% over 2 years by doing things as simple as sending reminders. Based on these studies, it does appear that technology will need to play a major role to make participatory medicine effective. http://xnet.kp.org/future/ahrstudy/032709cardiac.html

    As far as health care economics goes, there have been several articles about moving to care to lower cost venues (homes, clinics) with less expertise is what’s going to have the biggest impact on reducing health care costs. http://www.businessweek.com/magazine/content/10_11/b4170072396095.htmparadox technology health care blog

  12. SusannahFox says:

    Note: @PaulFLevy's shoutout to me is really for @KevinClauson and his excellent e-patients.net guest post: http://bit.ly/b55VFr

  13. amednews says:

    RT @KentBottles RT @leonardkish Why is participatory medicine such a tough sell? http://is.gd/aSGU9 #whypm

  14. Kevin Clauson says:

    A great opportunity for pharmacists interested in participatory medicine may be in the form of the Pharmacy Practice Model Initiative (http://bit.ly/bHD0dN) by ASHP. This initative was brought to my attention by @JFahrni and is a forward-looking approach to the next steps in pharmacy. The site highlights notable models (http://bit.ly/bziddJ) and the developing role of technology in the profession. However, other than varying degrees of emphasis on patient-centered care in descriptions, there is almost no mention of collaborative care or models, shared decision making or expressly stated aspects of participatory medicine. While this initiative is specific to hospital and health-system pharmacy practice models, it offers a concrete chance to get involved on this front.

  15. SusannahFox says:

    Also recommended: Why social media is easy but participatory medicine is hard: http://bit.ly/b55VFr by @kevinclauson #hcsm

  16. amnews says:

    RT @SusannahFox

    Recommended: Why social media is easy but participatory medicine is hard: http://bit.ly/b55VFr by @kevinclauson #hcsm

  17. KentBottles says:

    RT @SusannahFox: Also recommended: Why social media is easy but participatory medicine is hard: http://bit.ly/b55VFr by @kevinclauson #hcsm

  18. RT @SusannahFox: Recommended: Why social media is easy but participatory medicine is hard: http://bit.ly/b55VFr by @kevinclauson #hcsm

  19. Bart Collet says:

    RT @SusannahFox : Recommended: Why social media is easy but participatory medicine is hard: http://bit.ly/b55VFr

  20. SusannahFox says:

    @WSJHealthBlog In case you want to dig into pharmacy idea: read @kevinclauson post: http://is.gd/aSJFq and mine: http://is.gd/cT3WJ

  21. Luis Saldana says:

    RT @SusannahFox: @WSJHealthBlog In case you want to dig into pharmacy idea: read @kevinclauson post: http://is.gd/aSJFq and mine: http://is.gd/cT3WJ

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