ABPI, NIHR, and AMRC Join Forces to Advance Patient Involvement in Pharmaceutical Research
Key Insights
The Association of British Pharmaceutical Industry (ABPI (search)), National Institute of Health Research (search) (NIHR (search)), and Association of Medical Research Charities (search) (AMRC (search)) hosted the Pioneering Partnerships conference to promote practical implementation of patient centricity in research.
A new sourcebook for industry was launched at the event, providing guidance for pharmaceutical companies on effectively working with patients and patient organizations within the Code of Conduct framework.
Experts identified leadership commitment, adequate funding, and proper training as the three key challenges to successfully embedding public involvement throughout the drug development process.
The pharmaceutical industry is moving beyond rhetoric to action when it comes to involving patients in research, as demonstrated at the recent Pioneering Partnerships conference in London. Jointly hosted by the Association of the British Pharmaceutical Industry (search) (ABPI (search)), the National Institute of Health Research (search) (NIHR (search)), and the Association of Medical Research Charities (search) (AMRC (search)), the event focused on practical strategies to transform patient centricity from concept to reality.
"The ABPI (search) thinks this is really important, and we want to make sure that we are very clear and very explicit on that point. The aim is to build public involvement and patient engagement into the whole system, across the whole sector," said Sheuli Porkess, deputy chief scientific officer at the ABPI.
The conference, first held in 2016 but now organized collaboratively by all three organizations, brought together diverse stakeholders including patients, researchers, advocacy groups, clinicians, and pharmaceutical representatives to share challenges and best practices.
Overcoming Implementation Barriers
Simon Denegri, national director for patients, carers and the public at the NIHR (search), noted significant progress in recent years: "In the last five years or so, we have seen a real sea change in the charity and industry sectors around public involvement in research and that is fantastic."
However, he identified three critical challenges that must be addressed to fully realize patient involvement:
- Leadership commitment at the executive and board level
- Adequate funding and resources
- Proper training for researchers on the importance and benefits of public involvement
Porkess emphasized the practical aspects from the pharmaceutical perspective: "It's about allowing time for it and building it into processes. It's about understanding that if involving patients in the design of a study is going to put a month onto the beginning of the trial, then making sure the processes allow for that time."
New Industry Guidance Launched
A significant development announced at the conference was the release of "Working with patients and patient organisations – a sourcebook for industry." This practical guide supplements the existing Code of Conduct, which has sometimes been perceived as a barrier to pharmaceutical companies engaging with the public.
The sourcebook provides basic principles, informal guidance, checklists, case studies, and answers to frequently asked questions on issues such as research collaboration, meetings, and payments. Porkess clarified that the document is designed to help companies work more effectively within the Code's parameters rather than replace it.
The ABPI (search) is also participating in the Europe-wide Patients Active in Research and Dialogues for an Improved Generation of Medicines (PARADIGM (search)) project, further demonstrating the industry's commitment to this area.
Creating Systemic Change
Both experts agreed that embedding patient involvement throughout the drug development pathway requires organizational change driven by leadership.
"When you have someone internally saying: 'we are going to do this', that's when processes change. The more people who say 'yes', the better," Porkess explained.
Denegri emphasized the importance of setting clear expectations: "We need to build it into funding applications, then we need to check in with them and the patients and public to make sure the involvement was meaningful. People need to know that it is the expectation."
The Value of Shared Learning
Knowledge exchange emerged as a crucial factor for advancing patient involvement across the sector.
"I think shared learning is crucial. We need to bring all the partners together and offer them peer support to do this. And we need to explain what good looks like," said Denegri.
Porkess reinforced this point, highlighting the value of case studies and companies' willingness to share their experiences: "Companies can say 'yes, we have done this, come and talk to us'. They can help others understand the challenges and how to overcome them. I really think that the more we can get companies to share their experiences with each other the better."
Future Implications
As clinical trials become increasingly complex, the need for meaningful patient involvement will only grow, according to Porkess.
"Trials are becoming so complex that even researchers are saying they need some time to get their head around them. So we need to be even more mindful of making sure research is accessible," she noted.
The conference represents a significant step toward institutionalizing patient involvement in pharmaceutical research, with industry leaders recognizing that this approach is not merely a trend but an essential component of effective drug development in the modern era.