The importance of collecting and incorporating robust patient evidence at all stages of healthcare decision-making is acknowledged.

This can take several forms: from advocating for the “Patient Voice” in healthcare to be heard, eliciting preferences for new treatments, describing and communicating unmet needs. Adequate consideration of robust patient evidence can ensure that treatments are aligned with patient-centered principles, account for patients’ real-world experiences, and are informed by the values and preferences of the individuals who are most affected by those decisions.

Collecting patient evidence throughout the development and valuation of new treatments is vital, from influencing the Research & Development (R&D) priorities of academia and industry to reflect patient-perceived unmet needs, to having meaningful input in the health technology assessments (HTAs) and reimbursement of these new treatments.

In practice, however, patient evidence is not always given the weight it deserves. There is greater acknowledgement of the role of patient evidence in healthcare decision-making, but this is still primarily as research subjects rather than contributing to decisions.

Here we propose a consultative process to identify barriers to generating and incorporating robust patient evidence and to find or create meaningful opportunities for the patient input to be considered throughout the development and assessment process.

We expect to focus on the following key issues: 1/ Identifying and overcoming barriers in current processes for the consideration of patient evidence and  2/ Creating additional opportunities for patient evidence throughout the pharmaceutical development pathway

We propose to organize and facilitate a series of Roundtables with relevant groups of stakeholders (6-8 participants per Roundtable):
•  Phase 1: organization of a series of Roundtables to bring together patient, industry and HTA representatives to discuss challenges and limitations in current opportunities for patients to contribute their voice in development and assessment decisions, and to identify opportunities to improve these opportunities. In the first phase, the goal is to identify challenges.
•  Phase 2: we will bring all the stakeholders together and share summaries of the phase 1 discussions along with a ‘heatmap’ of priorities and their perceived effort and reward. In the second phase, the goal is to identify solutions.
•  At the conclusion of the second phase, we would summarize the discussion and develop a set of recommendations and a Roadmap for the short- and long-term priorities they identified.