Community Adboards (CABs) are a way to establish a two-way dialogue and to build trust. They are a platform to exchange scientific information and to receive patient perspective on all elements of the development program at all stages of the medicines development continuum.
In order to be successful, it (1) demands real and long-term commitment and support from the companies, including from higher management levels, (2) mutual trust (3) continued motivation and perseverance from all parties involved and 4) early engagement. Confidentiality, transparency, and the willingness to share information are also key elements for success.
- Research is key towards better outcomes, but often the trials are done without patient input, do not deliver on unmet needs, to not deliver patient-relevant data (e.g., PRO, QoL), are run in the wrong countries, do not recruit
- Care pathways are often not reflecting true patients’ needs’ and real-life situations, and they differ largely by region
- Access to treatment and diagnostics is often suboptimal or non-existent
– focus on the “most attractive big markets”, not on hugest unmet need
- Pharma’s patient information frequently doesn’t answer patients’ questions, not fit for purpose
- Pharma advisory boards are often not meaningful to patients, have little impact on direction, do not provide feedback on follow-up
- Patient centricity is often mainly a mission statement, not where the difficult decisions are made
- For patients and patient organisations: contribution with their view and expertise in an independent structured, transparent way, where they can have an impact on all stages of medicine development to ensure that clinical research takes into account their real needs and ultimately enable access to treatments.
- For companies: opportunity to get the patients’ perspective on the clinical development process and the post-approval data generation plan, to get feedback on the company’s pipeline and on how the portfolio meets the needs of patients, but above all, the opportunity to exchange on all sorts of situations and issues. In many cases, patient representatives can signal risks and opportunities that can avoid delay and failure in CT developments.
Confidentiality is key to discuss issues of highest relevance to both the patient community as well as the company, which should lead to impact and action on both sides.
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