Authors: Dr Sheuli Porkess & Dr Jennifer Harris

Patient and public involvement must be embedded at a system-wide level throughout the health and research landscape – across government, industry, charity and academic sectors. 

As patient and public involvement is a significant element of a patient-centric and real-world relevant research approach, the Association of the British Pharmaceutical Industry (ABPI) has been working with member companies and key stakeholders in the UK and across the EU to support best practice and overcome challenges. We’re now looking at how to embed patient and public involvement across the system.

Working in partnership is the best way to ensure patient centricity in research. Since 2016, ABPI have annually delivered their joint conference on putting patients first, with the UK Association of Medical Research Charities (AMRC), and in 2019 were joined by a third partner – the UK’s National Institute for Health Research (NIHR).

The annual conference brings together policy experts, industry, researchers, patients and patient advocates to inspire and inform the sector to better establish links with experts by experience, to create a more inclusive and relevant research environment for patients and the public. Through asking fundamental questions and the sharing of best practice, the conference promotes the benefits of collaboration and patient centricity.

At last year’s 2019 conference, ABPI launched a sourcebook for industry, to support pharmaceutical companies in working successfully and collaboratively with patients and patient organisations. As the Code of Practice has sometimes been perceived as a barrier to pharma, we hope these guidelines support and encourage partnerships between our member companies and patient organisations, patients and the public.

ABPI also contributed to the guidance for charities, published in September 2019, developed by the Charities Research Involvement Group to help charities in the UK and Republic of Ireland to promote and support involvement in industry-led research.

Our hope is that through the publication of guidance for both industry and charities, effective partnerships can be established to drive better patient and public involvement practices.

Our ambition to embed patient and public involvement system-wide doesn’t stop there. ABPI is a partner in the European initiative PARADIGM, actively involved in advocacy and developing tools to support best practice. The outputs of the PARADIGM initiative, upon its completion in August 2020, will play an important role in equipping researchers with the tools they need. In addition, PARADIGM is looking at the question of how to make this sustainable – insights which we can draw upon for the UK.

As we move into 2020, it is now clear that all stakeholders and individuals involved in research must continue to be ambassadors for patient and public involvement but evolve this collaboration to work across the system – only together can we overcome challenges and mentalities, to shift mindsets and evolve practices.

ABPI will continue to work with UK and EU partners to drive policy and best practice and support its members, and the wider research environment, to be truly patient-centric.