I had the chance to meet two representatives from the FDA’s Office of Health and Constituent Affairs during a patient advocacy workshop hosted by the National Center for Health Research, funded by PCORI (Patient-Centered Outcomes Research Institute).
The Office of Health and Constituent Affairs involves patients in a myriad of ways through patient engagement milestones, programs, and opportunities at the FDA. (Want to learn about these opportunities? Click here to check out a webinar replay.)
As they spoke, they described the type of patients they look for to serve on panels. Patients who are unbiased, who do not have conflicts of interest, and who are able to voice the collective thoughts of their communities.
It reminded exactly of the members of our WEGO Health Patient Leader Network.
WEGO Health Patient Leaders
Patient Leaders run Facebook groups, blogs, Twitter accounts, Instagram galleries and Tumblr feeds. Each of these epatients have their own opinions (I mean, we all do, right?). But, when they come together to participate in WEGO Health initiatives, they represent their community.
- Provide insights into what their communities are talking about.
- Summarize conversations occurring on Facebook posts, tweet chats and snap stories.
- Elaborate on the true struggles patient’s face and the resources they need to help manage.
- Lay out what is being shared, what isn’t being shared and what the community could really benefit from.
The Patient Leaders we call upon are active members of their communities and are motivated to help drive change. Therefore, when we have opportunities like Truvio studies or Community Insights Groups, they are our go tos!
Whenever you participate in a WEGO Health opportunity, it’s important to remember that you have been selected to represent your community. You have been selected to share your inner circle’s thoughts and to help bring a voice from all of your patient interactions. You’re entitled to have your personal opinion, but your answers should always circle back and reflect that of your community.
Because of this, Patient Leaders must keep an open and willing mind. They must be able to accurately reflect what is going on in the community, regardless of what they personally may or may not believe to be true. To listen to data, review materials and take action based off of the community at large.
As Patient Leaders, we have to be on the look out for the greater good. We have to remember that rules, regulations, policies, treatment plans – are created for the collective patient.
Having your own opinion, but keeping an open mind, is a quality we believe makes a strong Patient Leader.
We invite you to challenge yourself and answer the following questions:
- Are you willing to listen to other’s viewpoints?
- Given the chance, would you accurately voice the concerns of your community?
- Upon reviewing health specific materials, would you have your whole community’s needs in the back of your mind?
- In your quest for change, are you willing to help the global patient?
- Would you be able to unbiasedly look at clinical trials and decipher what science is telling you?
We all have our own journey, we all have our own beliefs, and we all have different definitions of quality of life. But, at the end of the day, if we want to be strong Patient Leaders, we need to draw upon the collective journey, belief, and definitions without our community.
Next time you have an opportunity to speak with a healthcare company, the FDA, a pharmaceutical company, or participate in a Truvio or Community Insight group – Remember! You have some BIG shoes to fill.
You have been chosen as a voice for your community.
Do your best to make the collective voice be heard!
Julie Cerrone is the Patient Influencer Network Director at WEGO Health. Working with WEGO Health as a Patient Influencer prior to joining the WEGO Health team, Julie wakes up every day motivated to help raise the patient voice. Follow Julie on Twitter, Facebook and on her personal blog.