Learning about successful patient engagement

Interview with Ed Trott, Chief Patient Officer, Ferring Pharmaceuticals, and Barbara Collura, President and CEO of Resolve

In this two-part interview we talk with Ed Trott, Chief Patient Officer, Ferring Pharmaceuticals, and Barbara Collura, President and CEO of RESOLVE: The National Infertility Association, about their upcoming appearance at Reuters Events’ Pharma & Patient USA 2020 (Virtual, Dec 1-4) and the challenges involved with patient engagement during the COVID-19 pandemic.  

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“We can’t replace humans. We are still the best at intimacy, caring and empathy. Somehow, we are going to have to get back to in-person interaction once this is over. Not everything will become virtual, but it will be a major part of what we do going forward”

— Ed Trott 

Could you please speak to the value of long-term partnerships for patient engagement? 

Barbara Collura, President and CEO of Resolve: As somebody who runs a non-profit patient advocacy organisation, you need to plan, you need to grow, you need to have multiyear projects. We don’t have a patient community that starts and ends between January and December, it’s a continuum, and so having partnerships that are multiyear and long-term allows us to fulfil our mission.  

You can work on multiyear projects; for example, one of the things that we are working very closely with Ferring on is changing laws in the U.S., both at the state level and the federal level, and that takes a long time, and so you can’t just have a partnership for one year, you have to have a long-term vision of where you want to go and work diligently year by year to chip away at it. You can’t achieve really monumental things in the patient advocacy space without long-term partnerships.   

 

Ed Trott, Chief Patient Officer, Ferring: For us, to echo what Barbara has said, the relationships that we need to establish are long-term, but the problems we are trying to deal with are not new. Patients have been dealing with problems such as infertility for years. A lot of our relationships are based on trust. The relationship we have developed with Resolve is based on mutual trust. We trust them to provide unfiltered information that helps us to make decisions, and we provide long-term support to achieve goals that benefit everybody with a fertility problem, such as changes in insurance and patients’ rights.     

 What does a ‘patient-centric’ approach mean to you? How is the global internal Patient Centricity Network (FPCN) contributing to patient group partnerships? 

Ed Trott: From a corporate perspective, a patient-centric approach means that we design a treatment or clinical trial or other health solution around the patient and their input. This involves getting feedback from patients and making decisions based on their needs and perspectives, rather than designing a solution based on the needs of a company.  

The Patient Centricity Network was created to increase cooperation and cohesion at a regional and national level between people who are responsible for patient advocacy, patient centricity, or patient engagement in their region or country. However, what’s more important is understanding the utility of the network, and the network is something that we all live in, and corporations live in now. Understanding the interactions in the network are important. What the network allows us to do is get information out and information in. It allows us to understand some of the activities that are happening in certain regions and the resources required to undertake these activities. There is a lot you can learn from such networks.    

What is the value of cultivating patient stakeholders, such as members of disease-specific patient advisory boards? 

Barbara Collura: One of the drivers of patient advocacy is the desire to make the journey better for the next patient, whatever that journey may be. This includes any number of things, whether it’s less invasive treatment, faster cures, access to care, awareness and patient education. For someone who experiences a period of poor health, there are so many things that occur to them that could help someone else who experiences something similar in the future.  

When you rise to the level of advocating for that change to happen, being in an environment where you can speak to pharmaceutical companies, policy makers, and others who are very influential in how the patient journey unfolds is empowering. Resolve is very good at mentoring and empowering people to speak up and advocate. The opportunity to come together in a focus group type scenario or any situation where patients can have influence and share their story to perhaps make life better for the next person who experiences a similar illness is incredibly rewarding.  

Ed Trott: From a corporation standpoint, I think you can look at it on two levels, either we’re looking at marketed products or products in development; from a research standpoint, it definitely helps us to match what we’re trying to achieve with patient needs and therefore patient engagement. The information that we obtain from these boards can help us to improve the products that we develop. The crux of this involves designing products and services that people need and use.