The evolving role of partnerships in clinical trial patient engagement

An interview with Lindsey Wahlstrom-Edwards, Head of Partnerships at Antidote

With the industry focused on patient centricity, the patient voice has become increasingly involved in the planning and execution of medical research. As such, the need for partnerships that connect patients with research opportunities — or make it easier to take part — is high. Over the last five years, Antidote has been building its partner network, which today stands at 300+ organizations. The majority of these are patient advocacy groups, while others are labs, data companies, or logistics groups. We talked to our Head of Partnerships, Lindsey Wahlstrom-Edwards, about the evolving role of partnerships in the clinical trials space. 

What role do patient advocacy groups play in clinical research?

Advocacy groups help shape and set the research agenda and open up dialogues around where needs are not being met in terms of current treatment options. With a deep understanding of the patient population, they can also be key players in helping develop new methods of engaging patients in research. Another critical role they play is making sure that patients are informed of the results of studies and surveys they take part in; they publish results in ways that are easy to understand, or organize patient summits to share findings and make sure that people understand the implications. And, of course, patient advocacy groups are always advocating with lawmakers to allocate funding for research investments. 

The world looks different now than it once did. How is the COVID-19 pandemic affecting advocacy groups? How are they changing the way that they are supporting their patient communities?

The pandemic has disrupted life for everyone, but for groups that are charged with the challenging work of helping connect people with resources and treatments, their work has become infinitely more complicated. Just because there is a pandemic doesn’t mean people don’t have cancer, or MS, or diabetes, or lupus, or any other condition they had before we had ever even heard of COVID-19. As groups who provide access to critical services, these organizations have had to shift how they advocate for their communities. Everything has gone virtual, including conferences. They’ve had to deal with smaller budgets due to decreasing donations. They’ve seen furloughed staff, creating additional work for already busy people. And for our lupus partners, on top of everything else, they are dealing with shortages of one of the only treatments available, which was purported to be a potential treatment option for COVID-19. 

What is the role of advocacy partnerships in the work that Antidote does? Why is this important?

One of the things I love about Antidote is that we do care about what the patients we serve think and what they need. In that context, we need to talk to advocacy organizations who understand patients' wants, needs, and challenges, as well as the funding landscape and issues with research. We need the full picture. 

I always say we are the tech experts, not the condition experts, and we rely on our partners to help us navigate that aspect of our work. Every time we launch a new therapeutic area in Match, we have advocacy groups ensure that the product is acceptable for that particular patient population. These groups provide guidance on how best to reach their communities with research opportunities. And, they hold us accountable for making sure that any data we collect gets into the hands of people who have contributed their time and information so that we can help move industry forward together. 

What is the benefit of ensuring the patient voice is heard in planning and executing medical research? 

Prior to working at Antidote, I worked in research. I’ve seen how study design can impact the ultimate outcome of a study; it doesn’t matter how great your treatment or device is if your study doesn’t work for the community. The important question is: how can we bring the patient voice into the earliest stages of planning? How can studies answer research questions but also follow protocols that are acceptable to patients? If the first time you talk to a patient is the start of recruitment, it’s too late. We’re happy to see a lot of patient organizations taking part in dialogue with pharma companies to make sure that the patient (and care partner) perspective is at the center. 

How has your role at Antidote evolved over the past five years? 

When I first started, I spent a lot of time convincing organizations that medical research was important. Over the last five years, we’ve seen change throughout the industry towards wanting to involve patients, and we’ve seen patients recognizing this and wanting to get involved. It’s been really fun — in recent years, we have advocacy organizations coming to us and proposing new ways of working together. My role has changed; there’s a lot more creativity in thinking through innovations in research and how tech and subject matter experts can find new ways to engage communities. I’ve been challenged to think about how we can get more targeted with our outreach, helping people understand early in the process if they’re eligible or not, and connecting them with other options if they are not. This work has reinforced that this isn’t an industry where a cookie-cutter approach works. 

You’ve been forging new partnerships with data companies, labs, even transportation companies — beyond the advocacy groups in Antidote’s partner network. Why are these new types of partnerships important? 

The idea of looking at biomarker data to help make decisions around treatment options is something that gained a lot of traction with tumor testing, but we’re seeing it increasingly common with other conditions. This is where industry is heading, and we’re working with new types of partners — labs, EMR companies, transportation companies, etc. — to meet the needs of research and make it really easy for people to screen for trials, even those with very specific eligibility criteria. The fact that a potential trial participant is short on time or doesn’t have access to transportation to a site should not be a barrier to participation, and we’re doing everything we can to ensure that it is not.