Working with industry workshop

Our third workshop of 2017 focused on the ways patient groups can collaborate with industry for better outcomes for patients.

One of our core beliefs at Findacure is that success within the rare disease community is reliant upon the collaboration of its members. In order to ensure progress, patient groups, clinicians, pharmaceutical companies, biotech industries and academics must work together. However, the prospect of this can be daunting, with many not knowing where to begin, what’s even possible, or how they can initiate engagement. With this in mind, on Friday 8th September we held our biggest workshop this year on the topic of “working with industry”, at the Royal Society in London. Scroll down to read summaries of the talks and watch their recordings.

Richard White - Chief Operating Officer, Oxford PharmaGenesis

Richard White from Oxford PharmaGeneis was first to the floor to deliver the first presentation of the day. Richard provided an overview of the environments in which patient groups and industry can interact, paying particular attention to why they should interact, how they can work together, and how to bridge the gaps to ensure success. Richard emphasised how patient-industry partnerships can drive forward improvements in medical care and talked through the life cycle of meaningful engagement. Richard finished by providing examples of good and bad practice, such as avoiding ‘tokenistic involvement’ of patient groups, ensuring regular, open and honest communication, and treating each other as partners.

Jill Prawer - Founder and Chair, LPLD Alliance

Next was Jill Prawer from the LPLD Alliance. Jill’s talk focused on creating funding partnerships with industry. Jill began by introducing the LPLD Alliance, and shared their own experience in securing funding to build their organisation. She then explored the key points of the ABPI code and the Charity Commission guidelines, which industry and patient groups must abide to when interacting. Finally, Jill presented a logistical overview of the different methods and means available to patient groups when applying for funding, including start up grants, unrestricted and restricted funding.

Rebecca Starkie - Director of Patient Engagement, Covance

Following a short break, Rebecca Starkie from Covance provided a case for industry to seek patient perceptions in their work. Rebecca explained why industry should be looking for patient input in their work and the changing attitudes leading towards more patient involvement. Rebecca then explained their approach to incorporating patients in drug development and the benefits for doing so. Finally, Rebecca shared a case study of a recent survey they undertook to gain patient input on clinical studies. She explained how the results of the survey challenged their preconceived notions of what a patient with a rare disease would be willing to do in order to engage with research, and stressed the importance of industry taking action on the information they gather.

Julie Vallortigara - Research Officer, Ataxia UK

The morning was finished off by Ataxia UK’s Julie Vallortigara, who gave a case study of Ataxia UK’s research partnerships with industry and other ataxia patient groups. Julie explained the research strategy of Ataxia UK, with the ultimate aim of finding a cure for the ataxias. Julie then focused on how Ataxia UK facilitate research through giving advice on the research landscape, conducting surveys, providing introductions to experts in the field, and acting as the patient voice in research. Julie finished by sharing two examples of Ataxia UK’s involvement with industry, the first of which allowed them to create a cost of illness economic model for ataxia, and the second which led to the creation of an international ataxia research consortium. Julie’s take home message was the importance of networking in allowing patient groups and industry to meet and start relationships that can lead to future progress.

Following a fantastic lunch and networking break, the workshop resumed with our panel session. Several key themes were explored, including what patient groups can do to encourage interaction with industry, implications of rules and regulations on these collaborations, and ethical considerations for patient groups working with industry.

The workshop concluded with our afternoon activity. In this session, we asked our delegates to work together in mixed tables of patient groups and industry representatives, and share their own experiences of patient group and industry collaborations, and explore the challenges and advantages of this type of interaction.

The first discussion point concerned forming collaborations, and looked at the aims and motivations of both parties, and their concerns when working together. In feedback, the main aims for industry tended to focus around improving their communication to patients and identifying patients for research purposes, while patient groups wanted research opportunities, raised awareness and ultimately a cure for their disease. Some of the concerns raised included industry managing patient group expectations and patient groups maintaining their independence from pharma.

For the second half of the session, our delegates looked at Clause 27 of the ABPI Code, which addresses the pharmaceutical industry’s relationships with patient organisations. For this part, we asked attendees to share their interpretation of the code’s aims, and assess its strengths and weaknesses. There was general consensus that the code helped assure ethical practice between patient groups and industry, and avoid any conflict of interest. However, many commented that the code was ambiguous and could result in pharmaceutical companies avoiding interactions with patients for fear of breaching the code. All in all, this proved to be a very insightful activity and we would like to thank all of our delegates for being so open and engaged throughout.

We would like to say a big thank you to our excellent speakers for sharing their expertise, all of our delegates for attending, Barbara Asboth for her wonderful photography, and Oxford PharmaGenesis for sponsoring the workshop.