The beginning of the patient engagement journey

Last night, on behalf of EFPIA, MSD, UCB and Bayer I had the honour of accepting the EURORDIS Black Pearl Award for patient engagement. It was an enormously welcome recognition for an enthusiastic industry patient engagement community. An indicator that we are, at least heading in the right direction and also underlining that this is a process of continuous learning and development. It is a process that EFPIA and its industry partners are committed to.

Science has never offered as many exciting perspectives as today. And to translate that science into medical innovation that is relevant to individuals and society at large, we need to remember that the driver for our work is not a technology or a disease, but rather people, patients, carers and families.

We firmly believe that the case for involving patients in research and development — as partners at each step of the process: from identifying research programmes, through to research design, to research implementation - has been clearly made and accepted.

While individual companies are making their best efforts individually to engage patients in research, we realised that we could do better by joining forces, combining our efforts and learning from our collective experience.

Patient engagement can often mean interacting with people when they are at their most vulnerable. There is no place for competition, trial and error or the “Not Invented Here” syndrome.

That is why, as an industry we came together to very openly share our successes and our failures, identify our gaps in knowledge, and share our collective experience. The aim? To accelerate progress and dramatically reduce the number of errors leading to the rapid implementation of good practice. And of course research and development is an ecosystem and real progress meant engaging, industry, as well as the academic community, regulators and crucially, patients.

This is how the next part of the journey started - launching a project under the Innovative Medicines Initiative. It is a safe space where patients/academia/regulators/industry can work together in a spirit of collaboration, to accelerate and improve the research and development process rather than reinventing the wheel.

And this community of the willing is growing.

The Black Pearl Award is a signal that EFPIA is on the right track. It also sets a new goal for us - to succeed in our joint public and private Paradigm change effort:

• to make tools and information available to anyone in the biomedical research community to meaningfully engage with patients
• to make this engagement integral part of our research culture: culture of care for people we work with and for, and culture of challenge of the status quo.

Cultural and practical change both take time and that journey is one that EFPIA and the other project leaders; MSD, UCB and Bayer are committed too. More than 20 other companies have joined or expressed an interest in the project and receiving last night’s Black Pearl Award from EURORDIS provides additional encouragement to pursue the collaborative path to better patient engagement in the research and development process.

Magda Chlebus

Magda Chlebus, Executive Director of Science Policy & Regulatory Affairs at the European Federation of Pharmaceutical...
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