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Better Understanding the Patient Voice at BIO 2018

June 7, 2018
Day Three of Educational Tracks at #BIO2018 included a panel on ‘Best Practices for Working with Patient Advocacy Organizations.’ Led by Karlin Schroeder, MA, Director of Community Engagement with the Parkinson’s Foundation, the panel included: Hillary Hansen, Executive Director for Advocacy and Strategic Alliances with Merck; Jessica Riviere, MHS, Senior Director of Global Patient Advocacy with Biogen; and Serena Hung, Senior Medical Director, Neurology Franchise with WAVE Life Sciences, Ltd.

In a thoughtful conversation about how best to include the patient voice into determining therapeutic targets, the group consistently reiterated several points. It should always involve bi-directional conversation, transparent and ongoing, with no one-and-done contacts as you get to know a patient’s story, going all the way through to post market research. The importance of a patient giving their clear/honest feedback throughout any process is critical and must be incorporated early on.

Karlin Schroeder described the work of the Parkinson’s Foundation, with more than 300 trained people in 42 states. They consistently work with industry, create patient panels, serve on advisory boards, and look across international partnerships, finding the most unique partners. These partnerships are also high touch, meaning they really do get to know the patients’ intimate backgrounds, helping to identify what sponsors might be looking for. Working closely with these partners then helps make conversation guides for panels, and better shapes questions for patients to best draw answers they are looking for.

Hillary Hansen said her team at Merck has created efforts bi-directionally through a Global Patient Advocacy Team focused on engaging what patients need and feel. They look at patient experience on the whole, from beginning to end, from an applicant looking at details on a website, to a patient dialoguing directly with labs, to actual participation in a clinical trial. Having spent years in the policy shop, Hillary noted it is immensely helpful for her to use that lens – how can we better shape their experience through policy, and get the policymaker or compliance person in the room to agree with you. Such as, bring in those that would not normally go to these type of events, meaning not just the lobbyists or the advocacy people. She noted a three-day conference of their entire team and a patient came and talked and really set up the perspective of ‘oh, this is why we do this.’ There wasn’t a dry eye in the house.

Jessica Riviere of Biogen noted that a way to really emerge yourself into the community (or enter into work with a new patient organization) is to spend time considering ‘how do we actually make this real day to day for a patient.’ She mentioned Alzheimer’s specifically, and what does it look like to live with very early or onset Alzheimer’s? What’s important to that patient as they begin to live with this? What’s important to their loved one(s), or their family, their doctor or caregiver? She said that it is so important to work on this part – and offered thoughts on how to educate their work to design clinical trials specifically for the patient. That is how to show there is consistent engagement along the way. Jessica noted onstage, and around the room, that we are all aspiring to it; but how do we get there? Build up your relationships early on, with honest and open asks.

Serena Hung of WAVE, a small biotech company of about 200 persons, noted their culture and how they dream of a world where patient experience is incorporated off the bat. Every month they bring in a patient to speak directly with in-house researchers, admittedly who have usually never seen a person with the actual disease they are studying before. She said that while they may undoubtedly understand the science, they simply don’t understand the impact. She urged industry to ensure patients first ‘tell us about the disease, tell us what is important to you.’ Then listen, as they explain how they are doing and why – building this foundation early on helps industry gradually along the process of a trial. With this ongoing conversation, you really help the patient understand what they are doing and how they are contributing to the research. That’s critically important because they are taking risks of themselves – giving their time and energy of themselves – and we owe it to them. It’s always a two-way convo: if they give us their specific information, they want to hear follow-up of what we did with that.

In talking about barriers and challenges, all of the panelists agreed that it’s imperative to reflect on who are you trying to talk to when considering attracting patients to a clinical trial. They mentioned in particular African American and Latina women. An anecdote was shared that patients have actually heard from their physicians that ‘you’re not the type of person who typically participates in a clinical trial.’ This is because unfortunate assumptions may have been made – and to put it bluntly for that patient demographic, ‘we weren’t even asked.’ Each of the panelists shared that it’s important to their organizations and companies to come up with some more health-literate languages to help truly show this reach – such as a diverse set of women in the pictures, which could help a patient who is perhaps on the fence when considering a trial to actually see themselves.

While discussing other best practices, the panel considered ‘what role do patient advocacy organizations play in introducing a patient to you?’ This is critical thinking, offers the real pulse of what’s happening out in a disease community, and is a really good way of helping industry understand what the boundaries are. A patient is a hotbed of information – there is so much expertise and value they can bring to you. Patients very often should be considered as experts, no matter their academic institutions / degrees. A person living with MS likely will amass just as much information and background as someone who went to medical school. This perspective shift can help industry change the way it talks about patient centricity and marry that up with collaboration. Additionally, challenging ourselves (within industry) to look at organizations beyond just the disease states you are studying, also creates a better understanding of what patients are going through. Coalitions around chronic, or rare, diseases can give you a diverse look at what’s going on around us, and offer a breadth of experience and perspective. This is particularly true in ensuring that minority communities are included.

They concluded by encouraging BIO to make patient engagement, developing tools and coming up with best practices, a ‘must do,’ and not simply a ‘nice to do.’ From their perspective, they are here at BIO 2018, and want to work together and really help strengthen the collaborative work that we know you’re already doing across all sectors of the biotech and life sciences industries.