Collaboration between patient groups and the pharmaceutical industry: Oxford PharmaGenesis participates in multi-stakeholder workshop

3 October 2017

On Friday 8 September, representatives from patient organizations and pharmaceutical companies gathered at the Royal Society in London to attend the workshop ‘Working with industry’, which was run by Findacure. The event aimed to explore ways and environments in which patient charities and pharmaceutical companies can collaborate to drive drug innovation in rare diseases.

Findacure is an organization that aims to promote collaboration between patients, the medical community and the pharmaceutical industry to facilitate the development of new treatments. Recently, a couple of Oxford PharmaGenesis employees became mentors to two patient organizations through Findacure’s peer mentoring programme. This scheme is one of their many great initiatives to inform and support patients with rare diseases and their loved ones.

Oxford PharmaGenesis was delighted to sponsor, attend and give the opening talk at the ‘Working with industry’ workshop, with our Commercial Director Dr Richard White presenting on the mutual benefits of collaboration for pharmaceutical companies and patient organizations. Collaborative projects are relevant during all stages of drug development, from early-phase research to product launch and clinical management. Earlier this year, Oxford PharmaGenesis had the privilege of developing a journey-themed workshop enabling people with acromegaly to give input into pharmaceutical study design. In another project, Kidney Research UK commissioned us to communicate the results of a UK-wide patient survey to patients through a clear and engaging leaflet, which was co-created with members of Kidney Research UK.

In the next presentation at the workshop, Jill Prawer, Founder and Chair of the Lipoprotein Lipase Deficiency (LPLD) Alliance, shared practical guidance and tips on how patient organizations can collaborate with, and obtain funding from, pharmaceutical companies. Her advice was based on her own experience of starting a ‘kitchen-table’ organization that progressed to a fully fledged charity.

Following on from Jill, Rebecca Starkie, Director of Global Patient Relations and Patient Outreach at Covance, demonstrated that industry understands the mandate to change. She revealed that 84% of senior decision-makers in the field of clinical development agree that pharmaceutical companies must incorporate the patient voice in drug development more effectively. Rebecca also shared the results of a recent survey that was undertaken to gather patient input into clinical studies, which highlighted the importance of understanding patients’ motivation to participate in clinical studies.

“Rebecca’s case study gave new insights into the patient perspective, emphasizing the need for early, meaningful inclusion of patients in clinical study design,” said Karen Robinson, Account Director at Oxford PharmaGenesis. “We are currently working with both patient groups and pharmaceutical companies to facilitate these collaborations.”

During the workshop it became clear that most patient organizations lack the know-how or points of contact to reach out and build relationships with the pharmaceutical industry. On their part, pharmaceutical companies may be hesitant to reach out to patient organizations for fear of being perceived as attempting to influence patients or to promote themselves.

“It is very encouraging to see patients and pharmaceutical companies coming together to explore a joint way forward,” said Laura Schmidt, Medical Writer at Oxford PharmaGenesis. “In the future, I hope that medical communications companies will enable and support collaborations between patient groups and the pharmaceutical industry.”

If you would like to learn more about how pharmaceutical companies and patient organizations can work together, please click here to download recordings and presentations from the workshop.