Purpose/ Role of the Group

The purpose of the Group is to ensure effective patient and public involvement in the ME/CFS Biomedical Partnership at all levels with people with ME at the heart of all decisions. 

In order to achieve this, the group has three main aims:

  1. To help maximise the probability of funding success through bringing patient perspective input to the application and study design
  2. To help maximise the probability of success of the project through aiding the recruitment of the necessary number of patient participants
  3. Bring the patient and public perspective into the design and management of the project.

As soon as the stages and their activities for the project are known in more detail, assessment of where the PPI team can contribute will be determined. As of current knowledge, the scope of activities could include the following activities:

The Project 

  • Contributing to the overall design of the study
  • Ensuring the recruitment process is appropriate and practical
  • Helping to develop the costs of the project
  • Acting as champions for the project
  • Contributing to the specification of the information to be collected from study participants
  • Contributing to the development of plans for supporting project participants
  • Contributing to the establishment of project priorities and agreeing tradeoffs
  • Dissemination of results in an accurate, balanced and understandable manner to the general public and the ME/CFS community
  • Contributing to the design of, and participating in, the decision making process of the project

PPI Involvement 

  • Helping any established or new researchers in this field to understand the perspective of people with ME/CFS
  • Devising/reviewing communications with ME/CFS community and the general public
  • Teamwork building within the PPI team and the project team as a whole
  • Build trust with the wider patient community by ensuring that the research and proposals are carried out in a transparent manner
  • Act as a conduit back from the wider community to the researchers allowing public to get questions answered and communicate concerns about the project. (Ex. Concerns/questions around recruitment process and questionnaire overload, privacy around information, etc.)
  • Ensuring that people with ME have a say in the governance process for the research project.

Membership

The membership of this steering group is open to the public as defined by the NIHR/Involve Guidelines (INVOLVE 2014) which includes: “patients, potential patients, carers and people who use health and social care services as well as people from organisations that represent people who use services” (p 6). 

Members of the Steering Group have been selected as representatives of wider networks/fora of people with lived experience of ME. Current members are:

  • Sonya Chowdhury (SC) on behalf of Action for M.E. (founding charity member of CMRC) and CMRC; Co-Investigator – Chair
  • Andy Devereux-Cooke (ADC) on behalf of CureME Biobank Steering Group; Co-Investigator
  • Countess of Mar (MM) on behalf of Forward ME                        
  • Charles Shepherd (CS) on behalf of ME Association (founding charity member of CMRC)
  • Jim Wilson (JW) on behalf of the CMRC Patient Advisory Group.

Responsibilities and Accountability

Steering Group members are responsible for:

  • Engaging with members of their respective networks to ensure effective communication about the project and its progress and provide opportunities to influence the design of the project and the application for funding; all information shared with them by the Management Group can be shared openly with people with lived experience of ME and the wider community 
  • Representing the views, wishes and feelings of members of their respective networks in discussions and decision-making of the Steering Group
  • Working collaboratively with colleagues in the Steering Group to identify constructive challenge and involvement to all aspects of the research project and achieving  consensus on content for the PPI Co-Investigators to feed into the Management Group
  • Ensuring that agreed actions are shared and confirmed at the end of each meeting.

The Steering Group is accountable for:

  • Ensuring transparency throughout its operations
  • Ensuring that the Co-Investigators are held to account for their role in the Management Group through reporting back on discussions, representing the views of the Steering Group and facilitating effective public involvement in partnership with the other Co-Investigators.

Below is a diagram of governance put forth by the management group for the project. It will be used to ensure a shared understanding about everyone’s place in the project. 

Aspects pertaining to scientific results of the study will remain confidential until finalised by the science team. Therefore, no aspects of results will be shared with the PPI group until all results are combined and finalised.

(Image current as of Nov. 8, 2019)

Review

This group will meet weekly during the research application development phase. If funding is awarded for the project, the group will review its terms of reference. 

It is anticipated that this Group will meet at least once every six months during the duration of the research project, as a minimum meeting standard and more frequently, when required. It is anticipated that there will be approximately 12 meetings during the four-year project. However, as the needs of the research project occur, the frequency of meetings may alter. 

In order to hold itself accountable to meeting standards, the group will evaluate the process and outcomes achieved at the end of each meeting. This will provide an opportunity for each person to ensure they have an opportunity to input, ensure they have been heard and review the chairing/facilitation of the meeting. Additionally, members will be asked to report on the impact their involvement is having in the project overall. 

Working methods/ ways of working

The PPI Steering Group will work to the National Standards for Public Involvement (INVOLVE 2014). The needs and limitations of each member must be taken into account and reasonable adjustments will be made. 

Working methods will be supportive of patients with a variety of different needs and severity of ME/CFS diagnosis, which may fluctuate or change over time. Individual members are responsible for ensuring self-care during meetings and can request breaks or other requirements at any time.

Meetings will be chaired by one of the Co-Investigators leading PPI. An agenda will be sent out by the chair of each meeting at least a week in advance (unless a more urgent meeting is required) of the meeting date for online/phone call meetings. All in-person meetings must also have remote access options in order to accommodate members who are not able to travel. 

The Chair will provide the secretariat for the group in the application phase. Depending on the outcome of funding, this will then transfer to a PPI Coordinator (yet to be appointed). Members are encouraged, where possible, to assist with minute taking but are not expected to.

The Group will work to the following value statements:

  • We are a collaborative community and will work inclusively to ensure meaningful public involvement
  • We support and expect the highest quality research
  • We encourage insightful questions and open and informed debate; we applaud and listen to those who have questions about research
  • We provide independent and transparent scrutiny and challenge to the research project and Management Group through the Co-Investigator members of the group.

Sharing of information and resources (including confidential materials)

All documents circulated should clearly specify their status. Once approved, documents may be shared freely to ensure transparency.

Given the nature of the circumstance of the research, confidentiality to some degree will be required. Confidentiality will be clearly stated and must be handled with the utmost respect and care for the community that this group is representing. 

Definition of terms

The following are a list of key terms that will be used during discussions of the research and in communications with the greater community:

  • Public: “patients, potential patients, carers and people who use health and social care services as well as people form organisations that represent people who use services” (INVOLVE 2014, p. 6)
  • Patient and public involvement (PPI): an active partnership between patients and/or members of the public (as defined above), and researchers. (RDS 2018)
  • Involvement: “where members of the public are actively involved in research projects and in research organisations” (INVOLVE 2014, p.7)
  • Participation: “where people take part in the research study” (INVOLVE 2014, p.7)

References

  1. INVOLVE. (2014). Briefing notes for researchers: Involving the public in NHS, public health and social care research. Eastleigh: INVOLVE Retrieved from https://www.invo.org.uk/wp-content/uploads/2014/11/9938_INVOLVE_Briefing_Notes_WEB.pdf
  2. Research Design Services (RDS) (2018). Patient and Public Involvement in Health and Social Care Research. 2nd ed. London: NIHR. Retrieved from: https://www.rds-london.nihr.ac.uk/wpcms/wp-content/uploads/2018/10/RDS_PPI-Handbook_2018_WEB_VERSION.pdf