This document sets out the Terms of Reference for the Steering Group of the Quality Use of Medicines in People Living with Dementia Priority Setting Partnership (PSP):
“What are the top 10 unanswered questions about medicines in people living with dementia”
Steering Group members will bring with them an understanding of dementia from their perspective as a person living with dementia, carer or clinician and access to networks of people living with dementia, carers and clinicians.
Introduction to the James Lind Alliance and priority setting
The James Lind Alliance (JLA) is a non-profit making initiative which was established in 2004 with the aim of enabling groups of people with lived experience of health conditions, carers and clinicians to work together to agree priorities for health research. The JLA supports teams to conduct a Priority Setting Partnership (PSP) to identify questions that have not been answered by research to date, and then to prioritise these in a particular health area. The eventual aim is to turn these priorities into research questions, and for members of the Steering Group to work with researchers and research funders to obtain funding for that research. Collaboration between people with lived experience of the health condition, carers and clinicians to set the research agenda is extremely rare, but vital in drawing issues to the attention of research funders that might not otherwise be suggested or prioritised.
The PSP consists of the PSP Lead, PSP Support Officer, Information Specialists, Steering Group and Partner organisations, supported by a JLA advisor. The Steering Group consists of people with lived experience of the health condition, carers and their representatives, and clinicians. Partner organisations are relevant professional and consumer advocacy organisations that assist in advertising the project and disseminating the results.
PSP Lead: Emily Reeve (emily.reeve@unisa.edu.au) is the lead for the PSP. The Lead works closely with the JLA Adviser and the PSP support officer to champion the PSP and ensure it is successfully promoted, completed and disseminated to funders.
PSP Support Officer: responsible for the coordination and administration of the PSP (person not yet appointed).
Information Specialists (Research team): Their role is to advise the PSP Lead and Steering Group on data management and analysis strategies. They also review and analyse the data collected, review existing evidence, and help develop the long list of questions.
The Steering Group will primarily communicate with the PSP Lead (or support officer) but may also have direct contact with Information Specialists and Partner organisations where appropriate. Steering Group members can also contact the JLA advisor if they have any questions or concerns with the JLA process or this project.
JLA Advisor: Katherine Cowan, katherine@katherinecowan.net (UK)
Further details about the JLA and PSPs are at http://www.jla.nihr.ac.uk/.
Role of Steering Group members
In all the roles and tasks outlined below, the Steering Group will be supported by the PSP Lead, Information Specialists and Partner Organisations where appropriate.
All Steering Group members are asked to commit to working according to the JLA principles:
- Inclusivity: working with other members respectfully and constructively and encouraging the full range of person with lived experience of the health condition, carer and clinical stakeholders to be involved in the process (for example, identifying different groups to send the surveys out to).
- Equality: people with lived experience of the health condition, carers and clinicians, and the knowledge and experience they bring, are of equal value.
- Fairness and transparency: declaring any personals interests, and ensuring decisions and activities are documented openly.
- Evidence based: recognise the existing knowledge base for quality use of medicines in people with dementia as supported by members of the research team.
Members of the Steering Group will:
- Publicise the project, and when completed, disseminate the results to their established contacts and networks.
- Take part in Steering Group meetings/teleconferences every second month (where scheduled). If unable to attend, submit comments ahead of the meeting. Where a Steering Group member is unable to attend a meeting, decisions made at the meeting will be respected.
- Respond promptly with feedback by responding to emails or phone calls.
- Declare any potential conflicts of interest (complete the Steering Group Interests and Privacy Form).
- Maintain privacy and confidentiality of all discussions with Steering Group members. The topics discussed, and decisions made by the group can (and will) be shared outside the Steering Group. But members should not share information that would identify, either explicitly or implicitly, who said what, unless specifically permitted to share. This will allow people to speak as individuals, and to express views and share personal experiences (which may include personal health and medical information).
Tasks of the Steering Group include (but are not limited to):
- Deciding on the scope of the project.
- Overseeing and providing guidance to all stages of the project including collection of evidence uncertainties, interim priority setting and the final priority-setting workshop.
- Reviewing and providing feedback to the PSP Lead (or others as directed) on all project related materials, such as advertisements, surveys and reports sharing the results of the project.
- Agreeing on the final shortlist of questions to be taken to the final priority setting workshop.
Payment: A sitting fee of $60 will be provided to each participating Steering Group member per meeting. If the Steering Group member is unable to attend the scheduled meeting, the sitting fee may still be paid if they have provided feedback on materials and/or questions at hand via email or over the phone.
Membership and running of the Steering Group
The Steering Group membership must be a balance of people with lived experience of the health condition, carers and healthcare professionals. Special support will be provided to individual members of the Steering Group as appropriate, and meetings will be run to ensure that all members are provided the opportunity to speak.
It is agreed that for the Quality Use of Medicines in People Living with Dementia PSP, 2 consumer representatives and 3 healthcare professionals will need to be present (or have provided feedback prior to the meeting) in order for Steering Group meetings to go ahead and for decisions to be made. Where decisions can not be reached through discussion and consensus, a vote will be held. Where a vote is held, at least 66% majority (of voters) is needed for the decision to be finalised.
The PSP Lead (Emily Reeve), will be present for and Chair all Steering Group Meetings. The PSP Support Officer and/or other members of the research team may also attend meetings to take minutes or if the group feels this is appropriate and useful. Neither the PSP Lead or other members of the research team will have voting rights.
An agenda and any supporting materials will be supplied to Steering Group members at least 1 week prior to the meeting via email or post (where requested). A copy of the minutes will be shared with all members no later than 2 weeks after the meeting.
Declaring interest
Steering Group members are asked to declare any interests relevant to the Quality Use of Medicines in People Living with Dementia PSP. Steering Group members will all complete a form, and the interests of each member will be shared among the group. This is to encourage a culture of openness and transparency. Relevant interests may be professional, personal or related to an interest in or involvement in clinical research.
The same form asks Steering Group members to consider their agreement to being named in publicity about the PSP.
Timescales
The Medicines and Dementia PSP first Steering Group meeting will be in March 2020. We propose that the final Steering Group meeting will take place in June 2021. If at any time a Steering Group member needs to stop involvement this will be accommodated, and a new replacement member will be recruited.