Now that patients and pharma are meeting each other online, a new middleman has emerged—the patient influencer. It’s no secret that pharma has tapped patient influencers to bring their products to patients in a more intimate and targeted environment, but these individuals are also dedicated patient advocates who pride themselves on not only bringing pharma to their followers, but giving their fellow patients a voice in the pharma industry. We reached out to nano-, micro-, and macro-influencers—and asked Health Union and WEGO Health to provide insights from the patients they work with—to find out what patient influencers need from their pharma partners and what is most important to them and their patient communities, no matter how narrow or wide.
Macro – Celiac Disease
Instagram – @celiacandthebeast
My favorite pharma partnership experiences were on the ground floor of market research for several different celiac disease pharmaceutical interventions. I was able to be an open book and help the pharma team understand exactly what we need as patients and what our community is looking for. Too often, we are approached as influencers after the drug has been developed and the marketing is done—just to pass along this information to our readers. But we want to be more involved than that! To pharma, we’re an open book and we’re here for you to understand the real needs of the patient.
Micro – Multiple Sclerosis
Instagram – @myelinmelanin
I would consider working with a pharma company whose interests extend beyond addressing abstract needs fueled by raw statistics. An ideal partnership would entail the company endeavoring to develop tangible ways to address the needs of individuals at a human level—as whole people. I particularly share pharma’s sincere interest in addressing ableism and racial and economic inequities often overlooked in spaces such as clinical trials, product development, advisory boards, etc. My work strives to bridge that gap between my followers and the companies who serve them.
Nano – Cystic fibrosis
Instagram – @EllaBalasaAdvocacy
I am mostly interested in patient voice and co-creation in clinical trial protocol development and product development. I feel so strongly that patient involvement from the inception of new research ideas, to development, and beyond would benefit patient communities. As people with the disease, we understand our daily challenges with our treatments and have valuable input about what may or may not be important to study long term. My followers want pharma solving the right problem, not the most profitable problem.
Amanda Osowski, MPH, CD
Micro – Crohn’s Disease
Instagram – @amanda.osowski
To make a partnership fit, I’d need a pharma company to be accessible to my community for questions, concerns, or additional engagement. True engagement looks like dialogue, comments, questions, resources, things that patients can share, things that patients can learn. I’ve seen patient-focused communities, apps, and concierge services do a great job of engaging with patients and community online, but I’m not sure I’ve seen any pharma companies doing the same. I also think that patient experience and testimonial go really far. Patients want to hear from other patients. Patients’ experience is very valuable—for both pharma companies and other patients.
Micro – Skin Cancer
Facebook – @skincancerdotnet
I would love to work with a pharma company on gathering data from patients/consumers. Most of my followers use topical chemotherapy creams and the majority of the questions I am asked revolve around side effects. These treatments are enigmas with so many side effects that vary from person to person. Traditionally, pharma companies set a standard of expected side effects, and doctors can be dismissive of any effect not on their list. Patients need more of a say in creating those lists. Having a representative who regularly experiences a myriad of side effects from topical chemo and can empathize with patients who are frustrated and fearful would create a bridge between consumers and pharma.
Nano – Parkinson’s Disease
Blog – myjourneywithparkinsonsdaybyday.blogspot.com
I think it’s very important for patients and the companies that help treat them to connect, and if I can provide feedback that will help others, then that’s something I think I have a responsibility to do. My patient community wants information that is accurate and understandable. Besides clear treatment benefits and potential side effects, we want information on affordable programs that allow for access to the care we need most.
Micro – HIV/AIDS
Instagram – @iamdanielggarza
During a great partnership with pharma companies in a HIV social media campaign, I found the best way for a pharma company to build a relationship with a patient influencer/advocate is to have a conversation, ask questions, and listen to the answers. Be ready to take constructive criticism, make changes, come back to the table, and maybe make more changes. Most importantly, a pharma partner must be ready to truly collaborate with their patient influencer and the entire patient community. Instagram is great for this—featuring short one-on-one conversations. YouTube through StreamYard allows for real-time audience participation live streams, and I’m happy to host one!
Macro – Hepatitis C
Facebook – @notwithoutafight.org
I believe that bridging a connection between patient and pharma—building trust between the two—would help the ignorance and misconceptions around the disease itself to dissipate. As a patient, I find myself being the educator during visits with family doctors, and even schools (where they are denying students with Hep C use of computers). Patients face this lack of knowledge and stigmatization every day and need a safe space to ask questions as well as tell pharma companies what they need—much of that being awareness and education.
Lisa Robin Benson
Micro – Migraine
Twitter – @LisaRobinB
My followers want to see that the pharma company understands our issues, whether it is the need for a new treatment or type of drug administration, or support for insurance or financial coverage, or even finding a doctor in our area. Pharma could do better to hire people to interact with patients who’ve either experienced the medical condition themselves, or have been trained with a deep understanding of the community. On social media, sometimes I’ll see a term such as “migraine sufferers” instead of “people with migraine” which immediately clues me in to the fact that some companies haven’t tapped into the language embraced by the community.
Macro – Parkinson’s Disease
Instagram – @drmariade
I would like to see more information about a disease in layman’s terms with information about participation in studies, ambassador programs, sharing of stories as well as patient accessibility to medications and treatments. These are the things I would share on my social channels, as well as in focus and support groups or conferences to educate patients and caregivers, not just on disease treatments, but practical tips for daily living. My followers and I also need to see more language diversity in information resources and ads in order to get different communities involved in the healthcare process.
Barby Ingle, BSc, Psyc
President, International Pain Foundation
Macro – Chronic Pain Conditions
Twitter – @BarbyIngle
I like to let my followers know what is coming down the pipeline for treatment options. Patients are often allergic to the traditional medication or have a non-reactive reaction to a medication the others find success with, for a variety of reasons. Having hope that they may have something that is right for them helps them get through the tough times. We also need pharma to help us navigate the system, such as speaking with providers, insurance companies, financial aspects involved with proper and timely care, etc. Pharma could be getting involved in the patient communities more often and more collaboratively on social media.