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At Medable’s PAC, Patient Advocacy is Personal

Jan 26, 2021 10:34:17 AM

The Patient Advisory Council (PAC) at Medable consists of a small group of experienced professionals who work within the life science industry in various capacities. This includes biomedical research, communications, caregiving, patient advocacy and patient engagement. This growing group of nearly 10 individuals, Richie Kahn, Jennifer McNary, Gaurav Dave, Sumaira Ahmed, Allison Kalloo, Joan Venticinque, Paul Kidwell and Jena Daniels help Medable bring a patient perspective to the many technology-based programs in which the company is involved as they strive to decentralize the clinical trial experience for patients.   

 The high percentage of available patients who are not participating in ongoing clinical trials is staggering and continues to grow exponentially despite the ongoing efforts of an extremely interested biopharmaceutical industry who is willing to present an array of experimental therapeutics across all disease areas with the potential to address serious unmet medical needs. It’s Medable’s goal to create technical applications and platforms for patients that will allow and encourage them to more readily engage in clinical studies and gain access to these novel medicines by making the process easier and less daunting. 

Many times, people who engage professionally within the realm of patient advocacy have a personal backstory or a professional connection as part of their motivation for involvement. Whether a patient advocate, caregiver, researcher or an affiliated role within the life science industry, it is not unusual for these individuals to bring their particular story to this crucial role. This is true with members of Medable’s PAC, whose diverse professional backgrounds add to the integrated capabilities they offer individually. To have an industry perspective as a scientific researcher or industry communications or patient engagement professional provides Medable with an impressive array of talents and knowledge to benefit patients and company collaborators. 

Chief among them is Richie Kahn; a PAC member and medical researcher who taps into his professional repertoire when asked to offer his unique take on a Medable project. Researchers are at the heart of any biopharmaceutical company and the data they are able to provide and the ability to view the patient experience through a lens that was borne out of years of time and experience spent in a research lab cannot not be underestimated. Medable clearly understands this notion, ensuring that company leaders and/or employees who have scientific research are a central part of who is hired. This also extends to the PAC where research is represented in the person of Richie Kahn.

“I bring my experience as a clinical researcher to bear in each PAC engagement and each engagement outside of the PAC,” said Kahn. Where I am working to engage the patient perspective. I have a pretty good understanding of how studies are designed; how industry recruits patients and some of the methodologies used that don't bear a lot of fruit. Even receiving pushback that is likely to be received when we suggest to them reviewing patient-friendly methodologies.``  

As important as research is to understanding the patient journey, there is no substitute for the experience of an actual patient or the input from a patient’s caregiver. This first-hand, real-world exposure presents the most unique viewpoint imaginable, and any information provided by individuals who occupy these categories has added immeasurable value to biopharma companies developing therapeutics. Particularly when considering issues impacting clinical trials where patient involvement is anything but robust and there is a concerted effort to attract, recruit and retain qualified individuals across the entire disease landscape. A fact underscored by two-time cancer patient and survivor – and PAC member – Joan Venticinque.

“One of the biggest barriers to trials is access. You have to take them to where the patients are, to their doctors; their trusted communities. Not only to academic institutions where access is limited. You have to ask patients what is important to them; whether the potential outcome of the trial is relevant to them. You have to start in the beginning and get patients involved on the study team. They cannot be an afterthought.”

When a patient goes through their disease journey which often does include engaging in a clinical trial an active and involved caregiver is with them every step of the way. Besides a patient’s medial team, the care partner is the most important person involved. They don’t experience the disease physically, but a caregiver lives as the patient does and feels the emotional ups and downs of an illness, plus is equal parts counselor, homemaker, chauffer, advisor, and quasi-expert on all issues impacting their loved one. Medable’s PAC has the good fortune of Jenn McNary’s involvement. Jenn brings her experience as a life science industry and rare disease patient advocacy consultant to PAC. More importantly, is her lifelong involvement as a Mother of two sons who have Duchenne Muscular Dystrophy and another son who lives with Primary Immune Deficiency. Jenn lives and breathes the patient experience and brings a unique understanding to her advisory role.

“I know what a burden clinical trials and healthcare can be to families. So, I think my biggest contribution to the group – and Medable clients – is to make everything that we do a bit more friendly to the patient.  When working on the Access app we knew we wanted to attract as many people as possible to participate in the study. In order to accomplish that, we knew that we had to make it easy and understandable; and to design a website that really appealed to patients. And so we were able to create tag lines that helped reach patients. I think it’s important to remember that there are a lot of people pulling patients in a lot of different directions, and especially when you are talking about non-interventional, observational studies where compliance is a real issue. We have to make the process less burdensome and worthwhile, and if patients get frustrated, they will end up not participating.”

Supporting Jenn’s contribution as a caregiver is her Boston colleague and fellow caregiver, Paul Kidwell, who brings over 13 years of caregiving experience and two decades worth of involvement as a biopharmaceutical industry communications professional and story creator to the PAC.

 “The caregiver is the silent voice of the life science industry. Much like in companies who took the time to learn from patients and what they could offer, and the information they could provide to help with clinical trials, the same is now true for interaction with care partners. We are the closest person there is to the patient and the same information and experiences the patients are living through; we also live through.” 

Within the context of all groups there is the need to have someone act as the “connective tissue” between members, the company and their clients. For the PAC, the “straw that stirs the drink” is Jena Daniels, a trained research scientist currently who holds the position of Medable’s Director of Research and serves as company Advisor to PAC. In her role she directs the administration, client/patient engagement, content development and all ancillary PAC programs and forges the link between Medable and PAC. All with the intent of “amplifying the patient voice.”

“For patients, understanding that only having a seat at the table, is no longer enough. In a past position, I served as Clinical Research Manager for kiddos with autism and some of my favorite moments were being that connective tissue and advocating for the families while they are participating in our trials, and then sharing that information with our trial team. I recognized how excited I was within that advocacy component and working for a company that believes in patient centricity and the importance of having that patient voice and bringing in that perspective of the DNA of what we do.” 

The role of patent advocacy within the biopharma industry has taken on increasing importance in the past decade with the majority of established and emerging companies. Engaging with and acting on behalf of patients is at the core of this business sector, and company leadership is relying on these professionals to help triage the challenges this role typically confronts; including disease awareness, clinical trial recruitment, drug development and regulatory involvement to name a few. This function is becoming a common necessity in all corners of the industry sector and companies like Medable recognize that when patients speak the entire industry listens. 

 

 

Paul Kidwell

Written by Paul Kidwell

Paul Kidwell is an independent public relations/patient advocacy consultant and podcast producer working in the life science industry. He has been part of Medable’s Patient Advisory Council since early 2020.

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