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EUPATI: A Paradigm Shift in Empowering Patients on Pharma R&D

Came across this interesting presentation of Jan Geissler, Director of the European Patients’ Academy on Therapeutic Innovation (EUPATI) on Slideshare. The EUPATI will provide scientifically reliable, objective, comprehensive information to patients on pharmaceutical R&D. It will increase the capacity of well-informed patients to be effective advocates and advisors, e.g. in clinical trials, with regulatory authorities and in ethics committees. A consortium of 29 organisations, led by the European Patients’ Forum, comprises a unique combination of pan-European patient organisations, academic and not-for profit organisations expert in patient and public engagement and EFPIA member companies. It features excellence in state-of-the art, high quality, objective education to patients about therapeutic innovation.

Opportunities

The opportunities to accelerate pharma R&D mentioned in the presentation by Geissler are:

* Personalized & translational medicine
* Increasing development cost
* Duplication and intransparency
* Pressure on healthcare budgets
* Many unmet needs

The interesting part begins where he states that regulators and stakeholders are ready to involve patients. This perfectly fits a symbiotic relationship as patients want to contribute, as they:

* Seek up-to-date, credible, understandable information about innovation in treatments
* Are unaware about clinical trials, translational research, personalized medicine, health economics, their key role
* Like to advise on needs, on protocol design, informed consent, ethical review, marketing authorization, value assessment, health policy
* Lack the education & training to participate as a partner in medicines R&D

EUPATI objectives

The Patients’ Academy will:

  • develop and disseminate accessible, well-structured and user-friendly information and education resources on therapeutic innovation
  • build competencies among well informed patients and the public about pharmaceutical R&D
  • build expert capacity in patient advocates
  • create the leading public library on patient information in six most common languages
  • establish a widely used, sustainable infrastructure for objective, credible, correct and up-to-date knowledge
  • facilitate patient involvement in R&D to support industry, academia, authorities and ethics committees

Growing Support for Co-creation Between Pharma and Patients

In a previous article I wrote about a conducted research that shows a growing support for collaboration between the different stakeholders and how social media and social technologies are business performance accelerators, enabling faster, better and cheaper output.

It will be interesting to understand to which extent EUPATI will integrate social technologies and insights extracted from social media to accelerate, inform and/or validate patient-centred research?

The many unmet needs as a stated opportunity can be discovered through research of conversations, better understanding needs and anxieties of patients, by doing so the direction of research can be steered where needed. Development costs can be decreased by adding digital layers of collaboration that spur development cycles by exchanging faster and cheaper the information needed between stakeholders.