Supporting patient and public involvement during COVID-19

COVID-19 is changing the way we do research which means we need to focus even more on finding ways to bring the patient voice into the research we do. During this time, ABPI continue to work together with our partners to embed patient and public involvement within research.

In response to COVID-19, we thought it would be helpful to summarise some practical guidance from the ABPI Sourcebook, with the aim of supporting companies to work compliantly with patients and patient organisations.

 


Patient and public involvement in research

Involving the public and patients as equal partners in the discovery and development of medicines is vital. The ABPI works with patient organisations and our members to improve how this is done.

 

In this #ValuingMedicine video Dr Emily Travis tell us how can patients can take charge of their care in research.

 


Working together: industry, charities, patients and the public

The ABPI wants to support relationships across the research sector, between industry, charities, funders, researchers, patients and the public.

ABPI has a Patient Organisation Forum which meets quarterly and provides a forum for Government and healthcare stakeholders to engage both charities, patient organisations and industry in developing policy. This forum is open to ABPI member companies and to registered charitable patient organisations only.

The ABPI has also partnered with the Association of Medical Research Charities (AMRC) and National Institute for Health Research (NIHR) on joint conferences, to share learnings and identify challenges in embedding patient and public involvement in research. These conferences have brought together key policy stakeholders, patients and researchers, and encouraged collaborative working and new partnerships.

In 2019, the ABPI-AMRC-NIHR Pioneering Partnerships: Putting patients first conference had over 150 attendees, with research, regulatory, Government, industry and charity sectors represented.

 

Click the image above to see the full size image

This schematic summarises some of the topics, themes and questions covered at the ABPI-AMRC Patients First Conference 2018. Read the full conference report.

 


Guidance to support industry working with patients and patient organisations

The ABPI wants to support relationships that are in the interests of patients and within the law and the ABPI Code of Practice. ABPI have worked with member companies and a number of charities and patient organisations to develop a Sourcebook for industry. We hope this guidance can support pharmaceutical companies in working successfully and collaboratively with patients and patient organisations.

The ABPI has also contributed towards the Shared Learning Group (SLG) guidance for charities on supporting patient and public involvement in industry-led research. We continue to work with CRIG to identify barriers to collaborative working and meaningful patient and public involvement in research. We welcome any reflections and case studies from industry and charities, on ways collaborative working and patient and public involvement has worked best or been a challenging.

In response to COVID-19, we thought it would be helpful to summarise some practical guidance from the ABPI Sourcebook, with the aim of supporting companies to work compliantly with patients and patient organisations.

 


Embedding system-wide patient and public involvement in research

The ABPI is committed to embedding system-wide patient and public involvement in research and works across a range of stakeholders to drive policy change to address this.

One way in which the ABPI is working towards this ambition, is through partnership on the EU-funded Innovative Medicines Initiative - PARADIGM (Patients Active in Research and Dialogues for an Improved Generation of Medicines). This initiative is identifying the tools needed by industry and patient and research organisations, to improve public and patient involvement in the discovery and development of medicines. PARADIGM is also working to develop metrics to evidence why public and patient involvement in research and is beneficial, and how to embed best practice in a sustainable manner.

You can read the ABPI's latest PARADIGM blog and some best practice examples from the pharmaceutical industry and others, on embedding patient and public involvement in research on the PARADIGM website

The ABPI will continue to work with key stakeholders in the UK and Europe to define policies to support patient and public involvement across the research environment.