What Is Patient Centricity?

Since the fall, I’ve had the opportunity to travel to a variety of conferences related to chronic illness, some where patients are at the helm, and others where they aren’t.

Along the way, I’ve learned what patient centricity is and isn’t.

Patient centricity doesn’t mean having one, two, or five token patients in a room surrounded by big pharma or doctors.

Putting “patient” in the title of a conference doesn’t mean that the conference is patient centric.

Patient centricity means not just having patients present, but viewing them as experts in their own right.  It means not just allowing patients in the room, but it also means allowing them to be equal participants in the conversation.

I think the fact that there is such polarization between doctors, pharma, and patients needs to be done away with.  We are all experts in our own right, and so we all should be viewed that way. After all, while we, patients, can’t survive without doctors and pharma, where would pharma and doctors be without us?  Without patients, they don’t have jobs.  And without patience and perseverance, not forging these relationships in a positive way is detrimental to all of us.

A lot of times, we see ourselves in opposition to those that take care of us or make our medications.  We don’t always see them as working with or for us, but against us.  We don’t always see them as compatriots in the struggle.  Sometimes we see them as adversaries, keeping us from really taking control of our own health.

So that’s why we have to work together.  We need patients at the helm. But more than that, we need all the players to sit in the same room together and have productive conversations.  It shouldn’t be us versus them.  It should be that we are all critical players in this game of health and illness.

Many pharma reps have asked about how pharma can best utilize patients?  My answer?  Hire us to work for you.  Patient centricity means paying us to share our time and ideas.  We can only really make change from the inside.  So we have to get inside.  I’ve actually applied to some pharma jobs that I was definitely qualified for.  I haven’t gotten any of them, and that is very discouraging.  But I’m determined to make a difference, and I believe that this difference is only possible from the inside.  And the difference doesn’t just start with us.  It starts with the realization on the part of these other groups that we are an essential piece of the puzzle.

But I think before pharma, doctors, and those other than patients that work in the healthcare arena pat themselves on the back for including a patient or two here and there, they have to understand that, that alone does not mean that they are being patient centric.  Patient centricity means putting us on advisory boards that don’t meet for one day, once a year.  Patient centricity means having conversations that continue beyond a discrete event.

I am grateful for the opportunities I have been given so far and look forward to many more in the future.  But I also think it’s incredibly important to get other members of this community involved so that not just the patient perspective, but a broad range of patient perspectives are represented.

I hope this serves as a clarion call, not just for patients, but also for others involved in healthcare, that being patient centric is not just needed, but necessary.  And the answer to the question of getting us all into the same room is not when, but now.

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