How Patient Advocates can Change Drug Development
Editor's Note: Jerry Matczak is the beloved founder of our digital efforts focused on clinical research education and awareness. He died unexpectedly in 2017, but his legacy lives on. This blog from our archives is slightly edited from the version he wrote.
When it comes to terms we use at Lilly TrialGuide, "patient advocate" is one of those we're using more and more, and have come to treat with the utmost respect.
Realizing not everyone might know what a patient advocate is, we're going to take this post to share on the important role a patient advocate fills, how they are helping to improve health care, and - more specifically - are impacting our effort to transform drug development.
By definition, a patient advocate is an individual or organization that represents patients to ensure they are getting the care from the health system, helping them through the complicated processes involved with getting the best care possible. (source: Wikipedia and APHA)
Why are patient advocates necessary?
Unfortunately, navigating the health care system is difficult, and assuring that individual rights and public good is preserved sometimes takes someone fighting for your interest as a patient. In the United States, complications come from bureaucracy either when dealing with government programs, corporations, navigating insurance processes, forms and endless loops, or even finding out which clinical trials you might qualify for.
Here at Lilly COI, we've had the opportunity to meet some amazing patient advocates, who live a passionate, vocal life in service of patients everywhere.
Pharma needs to stand up and listen to advocates If we're willing to listen, there's a very active community of patients and advocates are willing to engage with pharma.
There are always opportunities to improve, and by listening to those fighting for patient voice, we can all learn and help make a difference. And by doing so, we'll all be better off.
As Lupus Advocate Tiffany Peterson explains:
There are so many ways for pharma to be more patient-centered. I really think it’s all about asking the patient what they’d like from pharma.
What are some specific ideas?:
Engage in person...and online too! Patients are talking, communicating and connecting online..are we listening? There's a movement happening and e-patients are becoming more pervasive. ePatients are building a new kind of social operating system that is condition centered, patient centered and conversation can commence on existing channels (such as PatientsLikeMe or Ben's Friends) or can erupt on Twitter Chats such as #HCSM.
Only by listening, engaging and responding can drug developers learn from patients. For example, Scott Strange suggests that drug developers might discover what patients needs are begging to be met from treatment, and what patients are reporting about their current treatments. The industry is beginning to be introduced and take notice, through examples like Pharmaphorum's recent Twitter chat about rare diseases.
Help patients help themselves. As said by Jenny Dwyer, patients and caregivers desire as much information as possible when it comes to potential treatments or trials their loved ones might qualify for. Unfortunately information about clinical trials and the drugs that are being tested is difficult to find and understand. Sure, we have built tools such as Clinical Collections, but there's much to be done when it comes to making helpful information available to those stricken with disease, in ways targeted specifically to the patient.
This can only be a good thing, because as ePatientDave reflects - a more informed patient is a higher performing patient.
Every healthcare conference needs the patient. Passionate activists and advocates such as Regina Holliday use speaking engagements, her blog and events to drive change as a result of her advocacy. In Regina's case, she advocates specifically for patient access to Electronic Medical Records, and for the patient to be at the center of every healthcare conversation.
Regardless of a particular advocacy, the patient needs to be present, either electronically or in person, to assure their needs are represented.
What are other ways drug developers can engage with patient advocates?
Blog post originally appeared on LillyPad.