Purpose of the Standing Committee

The purpose of the Standing Committee is to create a space for patient and carer support organisations to convene and provide a place to discuss what has worked and what we need to do next in relation to engagement in health policy and the HTA process.

The Committee will identify strategies – based on grassroots experience – and recommend community-driven initiatives to increase meaningful engagement in the HTA process and key health policy areas.

Our unique position in the community and points of differentiation from other groups are that:

  • Standing Committee Members work at the community level and the focus will always be on facilitating the voice of patients in decision-making as opposed to an organisational position or top-down perspective (that is, the Standing Committee will take a bottom-up approach)
  • The Standing Committee will not only bring practical solutions to the decision-making table, they will also strive to test and implement those solutions, alongside patients and their families, to make progress, as opposed to developing position statements or broad policy documents that are not actioned.

Transparency, governance, CCDR’s role and sponsorship.

Transparency, governance and best practice community engagement is very important to CCDR. To this end we implemented an open application process for Standing Committee Membership and clear Terms of Reference, so that every patient organisation had the opportunity to express interest in the Committee.  Tenure will be for two years to allow for rotation of membership and to help build capacity within the community.

CCDR developed the concept of the Standing Committee and sought funding from industry partners to support the work of the Committee.  Sponsors include AstraZeneca, Sanofi, Novartis, Pfizer and MSD. Sponsors do not have any input into the work of the Standing Committee, that is, the Standing Committee operates independently.

To enhance transparency and to support the independence of the group, CCRD as recipients of the funding will not be included in the membership of the Committee. The role of CCDR will be in the form of a Secretariat support and as an ex-officio observer only.

For transparency, the minutes from these meetings will also be publicly available.