Collaborative advocacy between the pharmaceutical industry and patient-advocacy groups lies at the heart of pursuing better health outcomes. This has been proven time and time again, through many successful partnerships that have raised standards of care; introduced ground-breaking clinical trials; ensured new treatments reach patients; increased public awareness of neglected disease areas and promoted a preventative approach.1
Advocacy remains a complex process. It involves a diverse ecosystem of stakeholders, all of whom are operating in the same space; either working independently, or in partnership towards common goals but with different legal and regulatory responsibilities.
However, there are times when patient advocacy groups feel they are unable to participate as equals in a partnership or decision-making process – even when they should be at the heart of it. It is not enough to simply state the intention of making the patient’s voice central to advocacy work; this can only be achieved through genuine equity in partnership working.
Giving a voice to patient groups
As a health journey partner, Sanofi is committed to putting patients first and to amplifying patient voices. We want to work with individuals and patient groups to help deliver the best outcomes for patients, as part of our advocacy work.
With this in mind, we recently organised and funded a Future of Advocacy Partnerships Report, following a workshop that brought together representative voices from several patient-advocacy organisations. It provided a space for the group to discuss the current state of play regarding patient-industry partnerships.
The resulting insights have enabled us to create a blueprint for the next generation of industry representatives and patient advocates, to help drive the co-operation that will lead to improved outcomes for patients, patient organisations and the industry.
Five ways patients and industry can collaborate effectively
In our Future of Advocacy Partnerships Report we have identified actions that all those involved in advocacy collaborations can take to improve the impact and perception of these projects, ways of working, and ultimately, outcomes for patients. These were the key insights:
Put patients first
All collaborative projects should be designed by partners in the best interests of patients. Both industry and patient groups should consider how they are authentically serving the patient throughout these activities.
Respect each other’s expertise
Patient groups and industry should recognise each other as key stakeholders and ensure the respective expertise of each partner is recognised within the relationship. This helps to ensure that the design and execution of collaborative advocacy projects is meaningful, and that there is purpose for the partnership.
Be clear about processes
Industry partners should ensure they provide clarity to patient groups about their processes for contracting and applying for funding, as well as the measures in place to protect the independence of each organisation. Bureaucracy should be reduced where possible, and consideration should be given to how the company can further support groups who do not have the resources to access legal advice.
Maintain an open, two-way dialogue
Both sides of an industry-patient partnership should listen and be ready to discuss and adapt – both in terms of maintaining an open dialogue throughout a project, and reviewing and evaluating at the end. Learnings from the experience should then be applied, to optimise future ways of working and ensure collaborations continue to improve. Industry partners may, for instance, want to adapt their processes and operating procedures to reflect these learnings.
Champion working collaboratively
Industry and patient groups should always be transparent about their collaboration. They should also consider opportunities within projects to profile the benefits of working collaboratively through different media to their audiences – including healthcare professionals, the public, policymakers and of course, the patient community.
At Sanofi, we fully appreciate the unique needs of the patient communities we serve, and the importance of patient involvement in pharma decision-making. We believe that without the full participation of all stakeholders, holistic health pathways and solutions that best meet patients’ needs cannot be achieved. As one of many crucial conversations to come, we invite you to read our report and weigh in on the future of advocacy.
1. European Federation of Pharmaceutical Industries and Associations. Working together with patient groups. September 2017. Available: https://www.efpia.eu/media/288492/working-together-with-patient-groups-23102017.pdf. Last accessed March 2021
This article has been developed and funded by Sanofi
12th April 2021