Increased focus on patient perspective over the past few years has resulted in a flood of new firms pitching their ability to do work in this area. Just because someone says they do patient engagement, however, doesn’t mean they have the expertise to do it well. Effective patient engagement is relational rather than transactional, transparent rather than opaque, strategic rather than reactive. Here are three points to consider.
Some patients become experts, and even attend scientific meetings. These patients are easiest to find: they are known to the patient advocacy groups, they are active in social media, they shop for their care at the best treatment centers. If you are looking for someone to speak to regulators or weigh in on early drug development protocols, these are the patients you need.
A more typical patient is likely seen in the community, is somewhat reluctant to question his or her physician, and may not disclose challenges arising from their disease or treatment. This kind of patient can provide invaluable insight into understanding the patient journey and uncovering unmet needs. VOZ has worked with such patients to help shape drug development plans, to inform submissions for accelerated approval, or to impact a drug launch.
Other patients have a compelling story and the skill to communicate that story honestly and openly. These patients make wonderful spokespersons who can inspire both KOL’s and sales teams. They can speak to other patients and weigh in on quality of life issues.
In my years as a nonprofit executive I attended some advisory board meetings in which the company was clearly just ticking off the box that they had spoken with patients. These meetings are characterized by having too little input–or too much.
Some meetings were comprised of company presentations with no opportunity for advocates to comment. In others we were shown newly developed patient-focused materials, but were told that the materials could not be changed regardless of how we viewed them. You can imagine how frustrating those meetings were. Equally frustrating, however, are meetings with no clear guidance or deliverables.
Patients and patient advocates have a lot of ideas and opinions, but meetings in which participants brainstorm without proper facilitation result in a flip chart full of input with no direction, no prioritization, no strategy. A skillful facilitator ensures that everyone is heard, builds consensus around priority recommendations, and enumerates specific next steps. This approach produces value to your company and is valued by patients.
Every therapeutic area has unique characteristics, and this is particularly true for rare diseases. I have worked with a disease that affects 500,000 people a year, and I have worked with a disease that affects about 2,000 people a year. I can say with certainty that the dynamics are different.
Many patients with a rare disease have experienced misdiagnosis, have received conflicting medical advice, and carry the added burden of wondering if their disease will be inherited by their children. Rare disease advocates are scattered, with widely varying perspectives, attitudes, and levels of expertise.
Engaging such passionate, highly motivated patients can be challenging, but highly rewarding. VOZ has worked with rare disease groups to launch collaborative research networks, to develop registries, to contribute to hearings on regulatory and access issues. These activities were made possible through trusted relationships and a deep knowledge of the landscape.
The bottom line is this: the partner you choose to help you achieve your goals makes a difference. VOZ has two decades of experience in this space, and over that time has built long-standing relationships with patients, patient advocates, professional societies, and companies of all sizes. I know other firms who do patient engagement in a thoughtful, effective way. I also know that choosing a partner for this work is often a matter of the right fit. The starting point, however, must be working with a group that understands patients and knows how to make patient engagement count.
Years ago, I decided to participate in a three-day charity bike ride. I had not been on a bicycle in well over a decade and didn’t even own a bike. I purchased a used bicycle from a local store and agreed to pay the technician to give it a good tune-up, but about 10 miles into the ride the bicycle started wobbling. All the spokes on the rear wheel had come loose! I reflected that just because a store sells bicycles doesn’t mean they are experts. Stranded on the side of the road, I regretted not having done more homework.
Patient engagement is much more important than buying a bicycle, but the message is the same: do your homework. At a minimum, ask if the firm you are considering:
If you want to know more about how we approach patient engagement, or how a strategic patient engagement plan can help you achieve your goals just drop me at note.
Tim Turnham, PhD is a vice president at VOZ. Tim approaches patient engagement with the conviction that patients who are well informed and well supported live longer and better. He has a record of success in finding mutually beneficial connections between industry and patient advocacy groups to help achieve this goal. Tim has worked in pediatrics, HIV/AIDS, disabilities, and oncology, maximizing the insight and value that patient advocacy groups and industry can achieve through collaboration. Tim has spent countless hours listening to patients and caregivers, and helping give perspective to their experiences. In addition, Tim has worked closely with academic researchers, including convening two summit meetings that resulted in white papers on critical issues of cancer treatment. Tim holds a BA in microbiology, an MDiv, and a PhD in biblical ethics.