ABPI Patient Advisory Council

The Patient Advisory Council has been created to enable ongoing full, frank and open discussions and information sharing between senior patient representatives and ABPI Board and Executive team.

Vision

The value pharmaceutical companies bring to health systems through medicine and vaccine innovations is better shaped and informed across the life cycle of medicine through the insight and experience of patients living with a condition, sharing what really matters to them, their families, and their communities.

The ABPI aims to consistently integrate Patient thinking into our decision making, developing a mechanism to ensure the patient perspective is embedded into our strategic thinking.

The ABPI Patient Advisory Council - made up of eight chief executives or members of the executive leadership team from across UK patient organisations, provides ABPI Board Members and Senior Executive Team with meaningful patient engagement to inform strategy, policy priorities and work-plans across the ABPI.

Structure

  • The Patient Advisory Council will be formed from 8 senior leaders from across the Patient Charity sector.
  • The Patient Advisory Council will come together monthly either virtually or in person to explore topics requested by the ABPI Board. The Patient Advisory Council will draw upon the individual expertise within its representation and their wider patient communities to share diverse thinking.
  • Patient Advisory Council will receive a monthly virtual briefing of ABPI Board topics for future discussion and timelines.
  • 1-2 Patient Advisory Council representatives will attend the Board meeting to share the views of Patient Advisory Council on the relevant topics.
Read the ABPI Patient Advisory Council members profiles

Accountability

  • The Patient Advisory Council will be accountable to the Executive Director, Strategy, Research & Partnerships.
  • Working and supported directly by the lead for patient engagement from the Strategy, Research & Partnerships directorate.
  • The Patient Advisory Council will support the ABPI Board of Directors and Senior Executive Team in work to inform strategy, policy priorities and work-plans.

Principles

  • The Patient Advisory Council has been created to enable ongoing full, frank and open discussions and information sharing between senior patient representatives and ABPI Board and Executive team.
  • The work of the Patient Advisory Council is to enable senior leaders from across Pharma (ABPI Board) to explore patients’ perspectives and needs, in relation to key topics and themes impacting UK patients.
  • The ambition of the Board: Patient Advisory Council engagement is to create an environment that encourages the open exchange of ideas, information, and perspectives.
  • The ABPI Board will identify topics of interest for insight from Patient Advisory Council but will also respond to suggestions from Patient Advisory Council of topics important to patients. No topics is ‘off the table’ but following the experience from other Industry groups and insight, common areas of interest may include: - outcomes focused healthcare, medicines pricing, patient engagement in HTA, healthcare data and collaboration.
  • Through the Patient Advisory Council and other patient engagement work the ABPI seeks to ensure that the patient voice is included in the development of policy and practice.
    The Patient Advisory Council provides Board members with the opportunity to discuss aspects of medicines research and development. The aim is to provide insight and candid discussion, to inform thinking, not to create common positions.
  • Patient Advisory Council will not be expected to share the views of industry, nor will industry be expected to agree with Patient Advisory Council in all respects. Both Board members and Patient Advisory Council leaders will respect each other’s autonomy and right to act independently in areas where views differ as to the best course of action for their respective constituencies.
  • Where an individual is acting independently this must be clear that their views and actions are their own and not representing the ABPI.
  • The Patient Advisory Council in their work with ABPI will aim to ensure a wide range of patient views are represented seeking to address health inequalities by ensuring voices of seldom heard communities are included and represented.
  • Patient Advisory Council participants are not obligated through attendance to any additional external commitment or campaign work of the ABPI.
  • Patient Advisory Council members must keep all information pertaining to matters dealt with by the Patient Advisory Council and the ABPI/ABPI Board – including meeting discussions - confidential. This confidentiality requirement extends to meeting papers and all other communications.
  • The nature of Patient Advisory Council discussions at Board will be strictly non-promotional, in line with the requirements of the ABPI Code of Practice 2021, in particular clauses 25, 26 and 27.
  • Patient Advisory Council members will not misuse information gained in the course of their time as a Patient Advisory Council member for personal gain or for political purpose, nor seek to use the opportunity to promote their private interests or those of connected persons, or other organisations.
  • Patient Advisory Council members will comply with the requirements outlined in this document, and ensure that they understand their duties, rights, and responsibilities, and that they are familiar with the role of the ABPI.
  • Patient Advisory Council members are reminded of the need to comply with competition law at all times during any discussions with other members of the Patient Advisory Council or with the ABPI/ABPI Board.
  • Any individual who obtains information because they are, or have been, a member of the Patient Advisory Council must not improperly use the information to:
  • gain an advantage for themselves or someone else; or
  • cause detriment to the ABPI Group, any ABPI member company, or any individuals on the Patient Advisory Council or the organisations they represent.
  • In the event that an individual stands down from their role in Patient Advisory Council the ABPI will re-advertise the open position to the patient charity/organisation sector.
  • Patient Advisory Council representatives will be reimbursed for their time and reasonable travel expenses. The fee will be £500 per day or £250 per half day rounded up to the nearest 0.5 day on a monthly basis up to a maximum of £10,000 per annum which will be paid monthly in arrears based on a minimum time commitment of 12 days a year (including time preparing for meetings and travel time).
    You are in addition to these minimum hours expected to dedicate such additional time as may be reasonably required to fulfil your duties at the agreed daily rate up to the maximum fee.
  • The ABPI will reimburse reasonable expenses (including travel, subsistence, and other expenses) properly and necessarily incurred in respect of your appointment. Invoices for reimbursement with supporting receipts should be sent to the Executive Director, Strategy, Research & Partnerships.
  • These terms of reference may be altered by the ABPI at any time upon reasonable notice to members of the Patient Advisory Council. If members have any suggestions for changes, they should advise the ABPI.