Patient Advocacy-in-Training

Words by Kirstie Turner

The ideology that ‘you get out what you put in’ springs to mind when considering the pharmaceutical industry’s relationship with patient advocacy groups. While partnerships between these two entities are growing in numbers, the investment from industry to date has been, in many cases, purely monetary, and there is a rallying call for more support and training within these partnerships, to extend their reach and impact. But what are the benefits for pharma of investing their resources more heavily in these collaborations?

Speaking at Reuters Events Pharma and Patient Europe 2020 on the relationship between pharma and patient organisations, Cristian Perez, Head, Patient Advocacy and Communications, Oncology, Takeda, says: “We start by funding activities, then when organisations move into R&D, they require information and data. This original relationship becomes more complex and starts including wider resources; it is not just about money, but also about providing information.” By pharma lending their knowledge and expertise, as opposed to just monetary support, the potential of such partnerships begin to grow exponentially.

There is a multitude of skills that pharma can offer to elevate the impact of advocacy groups. “There is a complexity of engagement which is increasing and a clear need for organisation skills. When we talk about providing support for specific patient support groups, we can see now that it is more transactional, where we provide funding to cover the initiative, and as the relationship gets more complex, there is another set of resources being transferred. People who work with patient organisations need to understand a wider scope of areas, from policy advocacy to R&D,” explains Perez.

Ferring Pharmaceuticals’ partnership with patient advocacy group RESOLVE is a standout example of a collaboration that goes beyond monetary value. Barbara Collura, President & CEO, RESOLVE: The National Infertility Association, explains: “We have had a long-term partnership with Ferring on a variety of levels, spanning medical affairs, marketing, government affairs, and R&D, but we have seen a lot more interest in getting inside the patient’s head and getting their perspective.”

From patient surveys to focus groups, the pair have been using creative ways to gain patient insights, with Ferring’s approach to supporting these initiatives imperative to gaining patient trust. “We brought a diverse group of patients together in a room for a full day and had a number of representatives from Ferring there. I remember one of the patients saying ‘wow we have been here for 3 hours and we haven’t heard Ferring once mention products. You have just asked us about us and our journey and what we have been through.’ That was really insightful,” explains Collura.

Alongside support and presence, pharma must bring their experience to implement stricter frameworks that allow the most value to be gained. Vanessa dos Reis Ferreira, Head, Patient Advocacy Europe, Santhera Pharmaceuticals, says: “We need a structured, systematic, and consistent way to engage with patient groups and representatives. This would allow us to have a clear picture of all work led by patient groups and allow us to best connect the needs of the patient.”

We need a structured, systematic, and consistent ways to engage with patient groups and representatives

The notion of providing training and support beyond financial value should be a no-brainer for pharma – the more they invest in these advocacy groups, the more value they will gain across the product life cycle, resulting in better outcomes for patients. Perez concludes with the advice: “If you are going to work with patient organisations, have open communication, share projects, understand what the expected outcomes are, and bring together all the information so that you are aligned.”