Results of a Pharma-Patient Meeting

admedicum recently moderated another pharma-patient forum about "Patient Engagement in pharmaceutical R&D“. Our client, a pharmaceutical company, had invited advocates from a number of German patient groups, both for common and rare diseases. Joint working groups facilitated an exchange mainly on expectations, suggestions, and concerns on behalf of the patient advocates with regard to collaboration with the company.


Early inclusion in R&D! 

Advocates stressed primarily the request for inclusion of patient experts early in the research and development process of new medical treatments. Actual patient need and best solutions should be discussed also with patients from early on in the innovation chain. The term clinical trial design was mentioned frequently.


Transparency and Independence! 

Advocates made the strong case for transparency, in particular regarding contacts with members for purposes of patient "market-research“. Also, it was critically mentioned that often there is a complete lack of feedback and information about the result of the research and who will do what with the information obtained, especially if an external agency does the research. The resistance of patients to participate in surveys like that would gradually increase.


Too many requests from industry?

Patient groups mentioned their concern about the continuously growing number of requests for collaboration by industry about the same subject as e.g. patient journeys, clinical endpoints, rules for patient advisory boards, sample contracts, etc. There is a strong request for multi-stakeholder approaches where subjects are relevant to more than one company and patient group.


Collaboration is the Future! 

Both patient advocates and company representatives expressed keen interest and eagerness to follow up and increase collaboration. Opportunities are plentiful. It needs trust and good management practice to make use of them!

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