Getting Engaged: The Patient Voice

Do you have Nontuberculous
Mycobacterial (NTM) Pulmonary Disease?

by Amy Leitman


At the end of June I attended DIA 2016, the annual conference for the Drug Information Association, as part of their Patient Advocacy Fellowship Program. The Fellowship Program is a major initiative designed to build industry awareness of the importance of patient engagement. The conference itself had a number of sessions with a focus on patient engagement – more on that shortly.


As one of the Patient Fellows this year, I had the opportunity to connect with and learn from sixteen other patient advocates, most of whom are also in the rare disease space. That experience really drove home to me how important it is for us to have a collective voice on issues of importance. It also got me thinking about how patients can add to this voice in so many ways.


But first, the patient engagement portion of DIA.


There’s no doubt in my mind that DIA leadership is committed to integrating the concept of patient engagement into their curriculum so their membership, which is comprised largely of industry and regulatory professionals, embraces it fully. We’ve been very lucky to have a company working on developing a new treatment for NTM that has embraced patient engagement.


But this isn’t always the case. Though there were some great examples of companies who have already embraced the idea of patient input and engagement, there were a number of sessions at the conference which talked about patient engagement, but didn’t have patients or patient advocates involved in the presentation! One of the great things that came out of this experience is that we are very motivated to change that.


The biggest takeaway for me was how important it is for patients to get and stay involved, and to make sure their voices are heard – by industry, by healthcare professionals, and by the regulatory agencies that govern them. You all stepped up last fall when presented with the opportunity to make your voices heard through the Patient-Focused Drug Development meeting with the FDA, but every opportunity matters.


It’s the clinical trial you hear about. You may not qualify for it, but shouldn’t you at least take the time to find out? It’s that study or focus group – I know, you’re thinking “who cares what the packaging is like?” But you should, because it matters to you. What if that packaging is too difficult to open? A study or focus group gives you the chance to give that feedback. It’s a little thing that has a big impact down the road, and it demonstrates to industry just how valuable we are to them. Believe it or not, some of them still haven’t quite figured that out.


Those surveys you get? Some are a few minutes, some take 20 minutes to fill out. If you have the time to fill them out, do it. That survey we sent out on NTM species and geographic location? We presented the research at ATS in May – the first study of its kind. You did that!


If you ever doubted the power of your own voice as a patient, I hope I’ve convinced you by now that you matter. Your voices matter. Those little opportunities that don’t seem so important now? They can move mountains later.


IN 2020

8.2 %