Examining the microexpert role to improve clinical trials 3

Are you a microexpert?  You might be and may not even know it.

A microexpert is an individual with a uniquely valuable set of experience and information, that combined with other microexperts can create a powerful collection of knowledge of use to a broader community.  When microexperts are collaborating, there’s potential for valuable knowledge to emerge.

Networks of microexperts

Dr. Roni Zeiger, in a recent blog post, discusses networks of microexperts. In his post, Dr. Zeiger  discusses the next revolution in medical progress, as he sees it, is relying upon microexperts in a systemic way to inform decision making around patients and disease.  And patient communities, which are really made up of patient microexperts, are already on the job:

Patients, no surprise, have already begun to figure this out.  A well-functioning online patient community is a network of microexperts.  For example, a few might have a background in statistics and have learned how to interpret the results of clinical trials.  Others have the resources to travel to centers of excellence for their relatively rare cancer and bring back to the community what they learn.  Many of them read everything they can find, share potentially useful findings, ask each other questions, and discuss potential answers

Back to Dr. Zeiger’s comments above, it’s happening now. Let’s take Health Tap for instance. Health Tap is an interactive health network of patients and physicians where disseminated information is vetted amongst peers within the community. Interestingly, physicians are rated and recognized amongst their peers, based on responses to questions posed by patients; one could imagine microexperts emerging even among specialty physicians.

And who do you think patients will gravitate more towards to get their answers? You got it, the physicians who are identified as microexperts in what the patient is interested in.

Some examples we’re seeing today

At Lilly COI, we are witnessing patient microexperts firsthand.

For example, Jenny Dwyer, an ALS caregiver, has expertise that qualifies her as a microexpert in how clinical trials could be improved to meet the needs of ALS patients. As she puts it:

Clear and cooperative dialogue between ALS patients and trial developers could go a long way in helping everyone involved survive.

In another example, Jeri Burtchell has shared her perspective on how clinical trials should be improved for patients. Her experience as a participant in an MS clinical trial is insightful for other patients and clinical trial developers.

Patients are connecting and the community is learning and growing as a result. Using social networks such as Twitter or online patient communities, patients in clinical trials are learning from each other’s experiences and experts are emerging.

So why is this important in the clinical development setting?

Lilly COI believes there are tangible ways that microexperts can affect clinical development in a positive way.

With respect to trial protocol terminology, we’ve talked in the past about rebooting clinical study design documents for patients. As our tools become open to the public, we will look to microexperts of various backgrounds to lend their expertise in our effort to make clinical trial representation more patient friendly.

Microexperts can also play an important role in helping trial sites better their offerings. What if you were able to rate a trial site on different facets to influence the experience of the future? One could imagine ‘expert’ trial sites emerge among those that are being compared. Microexperts have the ability help influence their followers on the pros and cons of  a clinical trial and trial site.

As information is becoming easier to access and tailored to the individual, patients are becoming experts of their own disease states. And who better understands the complexities of one’s disease state in the ‘real world’ than the experts themselves? From trial protocol terminology to feedback in clinical trial site experiences, we believe microexperts harness the knowledge to help optimize the clinical trial process.

How do you see microexperts changing clinical trials and drug development?

3 comments

  1. Great Blog. It’s nice to know Industry Experts are recognizing Microexperts in Patient Communities. I am not sure I would have chosen the word “Micro”. In Ben’s Friends Patient to Patient Community Discussion Forums I not only Moderate but work with Members from every Forum on various issues including Research. and sharing knowledge to Forums that may have shared side effects or associated disorders and treatments.

  2. Thanks for you comment Tracy. At risk of speaking for Dr. Zeiger, I’m pretty sure the use of the term “micro” is in no way intended to reflect the value or the amount of work of those who share their individual experience to contribute to a greater body of knowledge. I think it’s far more likely that the term is used to characterize how the future of healthcare will be driven by communities of people with real, valuable individual experience that when combined with other “microexperts” will result in new untapped knowledge that is beyond what any individual “macro” expert might bring. I think that’s the idea, anyway – we look forward to chatting with Dr. Zeiger soon to gain a bit more insight. I think communities like Ben’s Friends are shining examples of how patient communities provide support and information to help it’s members, and also potentially transform how diseases are managed and new treatments are developed. Regardless of the term used, the notion of individual patients coming together in communities to change healthcare is a powerful idea.

  3. Pingback: ALS Connections » Examining the microexpert role to improve clinical trials

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