Empowerment, not tokenism.

Earlier this month, members of the Oxford PharmaGenesis Patient Engagement Team attended the annual educational event hosted by the Project Management Society in London. The event was held at the British Academy on the Mall, and featured several speakers and an expert panel selected to explore what it means to co-create with the patient community.

The meeting was chaired by Caroline Benson (Patient Engagement Interest Group Lead and co-founder of Cuttsy+Cuttsy) and opened with a talk from Jill Pearcy (Director of Code Engagement at the Association of the British Pharmaceutical Industry [ABPI]) introducing the accompanying sourcebook on patient collaboration. In anticipation of the Code update coming in 2021, Jill highlighted the need for continued maintenance of relevance in the digital and social age after 60 years of practice, and the necessity for broad accessibility for both patients and patient organizations. There will also be new digital guidance coming in January 2020 that will include social media use.

Next up was Dr Liz Clark (Vice President of Medical Affairs at Norgine), who offered her insights on introducing patient engagement curricula into the pharmaceutical workplace, notably employing the use of the Patient-Focused Medicines Development e-learning modules. Dr Clark explained that, in the past, clinicians needed to be walking libraries of medical knowledge; however, with so much high-quality reliable information now available online, patients are becoming more and more informed about their own health and healthcare options. Therefore, clinicians no longer need to be ‘libraries’ but ‘librarians’ able to curate and advise.

During the day, we also heard from breast cancer survivor Claire Myerson (Cancer Insights Panel Member at Cancer Research UK [CRUK]), who presented alongside Dr Lucy Major (Senior Patient Involvement Management at CRUK), Annie Gilbert (Global Patient Advocacy Relations Manager at Boehringer Ingelheim International GmbH) and multiple sclerosis advocate Trishna Bharadia. These talks highlighted the need for ensuring that patient expectations inform project scope and for establishing co-creation as the standard, and noted the changing patient landscape. Trishna also emphasized that, at its core, engagement must be relevant, appropriate, fair, transparent and compliant. Top tips for effective patient engagement from these speakers included using Google Analytics to search for preferred terminology within communities and ensuring remuneration is both fair and timely.

The last talk of the day before the panel session was from Dr Juhi Tandon, General Practitioner and Clinical Director at Cognitant. Dr Tandon has been instrumental in developing a virtual reality platform that puts informed decision-making about long-acting reversible contraception directly in the hands of the service user. Hosted on Cognitant’s Healthinote application, the platform enables clinicians to prescribe information – and access to information – as a form of healthcare. The key message in this talk was that consultation through patient engagement and patient empowerment was absolutely essential for the development and delivery of such a project.

To wrap up the session, the speakers convened a panel discussion to answer questions from the floor and concluded the following:

  • Consultations need to draw from as wide and diverse a demographic group as possible, even from within a narrow pool of relevant service users.
  • Patients need to be involved from the outset because they are the stakeholders and their voice matters.
  • Partnerships across sectors and industries must share the same values.
  • Engagement is there to empower the patient and benefit the industry, not to serve as a form of tokenism.

To summarize the day: accessible information and training in the use of the tools needed for informed decision-making are essential forms of healthcare.