PREFER: Patients and researchers in partnership

2021-03-05

Giving patients a voice in the development of treatments means we first need to listen to them. The PREFER project develops recommendations for when and how that voice can be heard through a structured approach known as patient preferences. We rely on four patient organisations to make sure the patient voice is heard in the project. Together with universities and companies, they are part of developing recommendations for when and how patient preferences can be part of decision-making on whether or not to develop a treatment, if it should be approved, become available to patients, and what to do in case there are safety concerns after it is put on the market.  

Medicines, therapies and medical devices that can help diagnose or treat a condition are made for patients. Ultimately, these medical products are made for patients. In PREFER, the patient perspective is included on several levels. The European Cancer Patient Coalition (ECPC), European Patients Forum (EPF), International Association of Patient Organisations (IAPO) and Muscular Dystrophy UK (MDUK), are full members of the project’s consortium. This means they are involved in the research and have a voice in PREFER’s decision-making bodies. To complement their voice, we involve patients and patient organisations in our clinical patient preference case studies. Here, local patient oganisations and advocates that understand the disease are contributing to the design of surveys, ensuring that the language is understandable, recruiting participants and making sure that results are communicated back to the people that participated in project’s research. 

PREFER patient partners will now take on a proactive role in the project to make sure that what it is done for patients, will be also understood by patients. This means a major role for patients and patient advocates in review processes. But this is not limited to ensuring that all project’s patient-facing materials are created in a patient-friendly manner (although that is a very important part of our work).  The patient partner organisations in PREFER are also contributing to the discussion on how to write the scientific reports, and checking the researcher’s work. The four patient partners will also be actively involved in communicating about PREFER to patients. This means being part of the development of any patient-facing materials to ensure that it is understandable, explaining the results in plain language. Remembering that most of the patients we want to reach are not native English-speakers.

The output of the project will be a set of recommendations for when and how to best give patients a voice in medical product development that will be promoted among advocacy groups on national levels. To be able to take on a role as advocates for patient preferences, ECPC, EPF, IAPO and MDUK will make sure PREFER develops materials that are easy-to-use and translate. Because for PREFER successful patient advocacy on patient preferences, goes hand in hand with patient education through training in plain and clear language.

We join forces to give more and more patients a voice in drug development. We are bringing patient preferences to national and European policy makers, the companies that develop medicines, the authorities that approve them (regulators), and decide on what becomes available to patients in different countries (HTA bodies).

By Antonella Cardone & Paulina Gono, European Cancer Patient Coalition (ECPC), Valentina Strammiello, European Patients Forum (EPF), Kate Adcock, Muscular Dystrophy UK (MDUK), and Kawaldip Sehmi & Sonja Potenze, International Alliance of Patient Organisations (IAPO)

About the project:

PREFER is a five year (2016 – 2021) project funded by the Innovative Medicines Initiative (IMI) working to provide a set of systemic methodologies and recommendations to assess, engage and include patient perspectives during the development, approval and post-approval of new therapies, providing a better understanding of recommended best-practice approaches.

Last modified: 2021-09-29