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.

The ABPI is a proud signatory of a bold new shared commitment to improve public involvement in research. Together with other funders, regulators and research organisations who play an important role in UK health and social care research we have promised to:

  • listen to and learn from the people and communities we involve and apply and share that learning
  • build and share the evidence of how to involve the public and the impact this has
  • support improvements in equality, diversity, and inclusion in public involvement
  • promote the UK Standards for Public Involvement

Read more about our commitment.

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 learning 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.

As a long-term cancer patient, I’ve spent weeks of my life, hanging around in waiting rooms and meeting all sorts of different people, different patients all in different situations, different walks of life, but we all have a commonality and usually a terminal diagnosis.

 

And one thing that I've learned is that the system can be horrendously inefficient, partly because it's still non-digital but there's a lot that you can do as a person and as patients to help improve your own care.

 

Once you're in front of the right person with the doctors and nurses are absolutely brilliant and they really, really know their stuff and they're there to help you. You can do a lot of things to take control and help yourself as well.

 

I think it's really important to make sure that whoever you are sat with whichever healthcare professional, it is they see you as the person you are and the person that you want to get back to being.

 

For example, if you're somebody that walks your dog every day for two kilometres, the doctor doesn't know that from the notes that they have in front of them, but you can help give them that picture and really understand where you want to be again.

 

To do this you need not to be intimidated. Yes, okay, the person sitting in front of you has spent years at medical school, and of course they know their stuff and has all of the specialist knowledge but you're the only person that truly knows how you feel and how you're experiencing your disease.

 

It's important that you're not scared and that you convey this and don't just listen and don't just say yes to everything.

 

Have a slow and considered opinion on what's happening to you and be prepared to challenge things.

 

Communication between different departments can be hugely frustrating, especially in these non-digital times, but again, take charge of your own care.

 

And don't be scared about calling in and about giving your point of view and about saying things that you're frustrated about, because you can help to make things better for yourself, and it will make you feel better about how you're managing your own disease as well.

Patients involved in clinical research are vital to finding new treatments. Dr Emily Travis takes us through how, as a patient, you can take charge of your care in research #ValuingMedicine

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.