Night and Day



No, I’m not talking about the phases of the sun and moon, but the differences between the two major conferences I attended in June.  First up was the Consortium for MS Centers (CMSC) and my month ended with DIA 2016, the annual conference for the Drug Industry Association.

#DIA2016 was infused everywhere with the words ‘patient engagement’ while I saw very little of this labeling at #CMSC16.  What I saw and heard was just the opposite – almost every piece of #CMSC16 was about patients and there was no need to proclaim anything about patient engagement in the process.  I would have liked to see more people affected by MS as part of their formal program, but there was no doubt to me the entire meeting of #CMSC16 was about the patient and their caregivers.

#DIA2016 was the opposite – I found little evidence of the patient voice in the presentations or elsewhere.  The purpose of this major meeting of the drug industry was clearly about all phases of the development of drugs, but how patients were engaged in any of this remained a fairly vague concept. Do you know the phrase lip service? – this is exactly how the #DIA2016 experience felt to me in the large picture.

On a  brighter note, but also  on a  much smaller scale at DIA, their leadership does seem to honestly have the desire to be true to this concept of patient engagement and as such, they have a wonderful asset in Elizabeth Lincoln, as the Director of Global Engagement.  Elizabeth was in charge of preparing our class of DIA Patient Fellows for this event, and she has been a constant voice about patient engagement being central to their processes.   The leadership of DIA has encouraged the patient fellows to remain involved after the convention, and to submit ideas for presentations in 2017.  The challenge for DIA is to insist that all of their presentations include patients on the panels of experts and not just the ones constructed by patient advocates.

There are lessons for DIA to learn from attending conferences such as CMSC, where the patient is at the center of every piece of conversation. I recognize this is a major shift in thinking for the drug industry to undertake, but if they want to offer more than lip service to the idea of patient engagement, it would be a useful first step.  The flip side of this is the patient advocacy organizations and those of us who have attended DIA or anyone else who is interested can help this process by joining DIA and contribute to their patient engagement discussions. I’m in …. How about you?



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