Engage me…

Last week, I had the opportunity to participate in a patient panel at the “Virtual Clinical Trials In Drug Development Conference”, in Philadelphia.




I thought I was a good candidate to participate because in addition to being a patient,  I participated in IFAAs “A Community Team” (ACT) as a patient leader running focus groups.  ACT aimed to test and develop new collaboration strategies to enhance engagement between industry, researchers, and a global pool of patients to improve endpoints, expedite processes, and better utilize research dollars in the early drug development phase.  We begin our second phase later this year.

Over the years, I’ve spoken on many patient panels at healthcare/pharma conferences.  The topic is often “patient engagement” in some form.  Now when I hear the terms “patient-centered” or “patient-engagement” in terms of pharma, I cringe a bit inside.  Not that I don’t think patients should be the main focus of health care, but the term has become a buzz word that often lacks substance.  You see, individuals in the pharmaceutical industry really can’t “talk” to patients 1:1.  There are legal restrictions set by the government to regulate patient and industry interactions.  Although I do recognize the reasons for regulation, I often thing it causes a lot of mistrust, misunderstanding, and misinformation to be spread between patients and stakeholders. So their version of patient engagement is often facilitated through third party players.  Because of that, things get lost in translation…..important things.

The rise of social media has thrown many patients into the spotlight.  It turns out that we have a lot to say…..and big pharma has taken notice…..but they still don’t know what to do with us. So they invite us to the patient panels to share our stories and to help them better understand the patient mindset.  I can’t tell you how many conferences I have attended where the stakeholders really don’t know what patients want…..because they aren’t really allowed to ask us directly.  It’s really a dysfunctional relationship.  As a result, there is a lot of mistrust and wrong assumptions.  For example, there was a discussion on how a large percentage of patients do not want to release research results to their general practitioner.  I wasn’t there for the original discussion, but I did share my perspective.  My GP is probably the doctor I have the least contact with especially in regards to my chronic illness.  If I was participating in research, I would assume it would be for one of my chronic illnesses.  I would want my specialist to know results of research I participated in, but most likely not really care of my GP was involved.  Often times, I only see them for colds/sinus infections and can rarely get in to see him during those times.  I don’t know if that shed a little light on the situation, but I felt the need to share my perspective.

Originally, I was really excited about the term “patient-engagement” but I fear it’s fallen into a cliched buzz word instead of an actually way in which to engage patients purposefully.  It’s time to stop having health care happen to patients and start having healthcare happen with us.  The dawn of virtual research/clinical trials is both exciting and nerve wracking for stakeholders and patients.  I often look for research that I can participate in; however, my location doesn’t seem to be a hub for autoimmune arthritis research.  Location barriers can be eliminated through virtual and/or hybrid clinical trials providing interested patients and opportunity to participate.  It was pointed out that approximately 5% of patients are able to participate in research and we (the patient panel) were asked how to engage the other 95%.  Linda

If you want to recruit patients for research, engage patient advocates to help.  If you want to know why patients don’t include their GP in research results, ask patients, don’t complain how it doesn’t happen.  If you include patients in research follow up with them on results or outcomes.  Patients deserve to know and understand their worth in the research process.  They also need the opportunity to participate.  Virtual and hybrid research opens up the potential for patient engagement more than ever before. I can’t say how many patients do want to participate in research, but as Terri Ellis, a fellow patient panel pointed out, eliminating barriers like cost and travel, can assist in recruiting more patients who may not have been able to participate otherwise. She also relayed a story about her son participating in a research study and when she found out the outcome being studied, she wished she hadn’t agreed to participate.  She knew the outcome was not realistic for son or others in the study, but without having that knowledge she entered in good faith.

The third patient panelist was MarlaJan Wexler (my patient advocate buddy) from Luck Fupas.  I’ve spoken at many events with MarlaJan over the years.  Her story is inspiring and her insight as both a patient and a provider is eye-opening to many professionals in the room.  She relayed a personal story about her dad who passed away while participating in a research study.  No one from the study ever contacted her family to provide closure, to express sympathy , or to even say “Thank you for participating”.  I’ve met other patients over the years who participated in research studies to never find out the results or if their time investment led to outcomes.  My dear friend’s father was participating in a study and was actually not responding to his treatment.  The doctors knew this, but the information was never relayed to the patient or his family.  He went in for treatment and was told his disease progressed too far and there was no more that could be done for him. He died in days, still thinking that he had hope.  Was he in denial? Absolutely. Why was he in denial? Not just because he wasn’t ready to die, but because he wasn’t given information he (or his family) needed to come to terms with his death.  The hardest part for his family was watching him be so unprepared to die in his final days.  These two examples are unsettling.  Patients and their families deserve better.  Later on during the conference a lawyer was describing the legalities of virtual clinical trials and used the word “patient” then quickly amended that to “subject”.  I understand the lack of personalization in research.  You need objectivity and non-biased judgement to have an effective outcome.  Research and “fuzzy feelings” don’t really go hand in hand.  The word “subject”dehumanizes the “patients”.  It serves a purpose, but it’s cold.  Being sick is a very human experience.  If researchers are wondering how to recruit more “subjects” they may need to make sure they are treating them like human beings and not numbers or statistics.

MarlaJan from Luck Fupas and Kelly from As My Joints Turn.

As I’ve said in the past…..being a patient is not a job that I ever wanted to have. There is no training to be a patient advocate.  I don’t know how to bridge the gaps between pharma and patients to make things more effective, more productive, and more….human.  I can only speak my truth, along with other advocates, and hope that someone listens.







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