Humber Yorkshire Coast Cancer Research Network CONSUMER RESEARCH

Humber & Yorkshire Coast Cancer Research Network CONSUMER RESEARCH PANEL (CRP) Pitfalls and Peaks – The formation of a Consumer Research Panel (CRP)

Background The NHS Cancer Plan (2000) set out the first comprehensive national cancer programme. It Identified four aims: to save more lives n to ensure cancer patients received the most appropriate treatments, care and support n to tackle geographical and socio-economic inequalities in cancer care and treatment outcomes n to develop the cancer workforce and increase research n

In 2004 the National Cancer Research Network and Macmillan Cancer Relief initiated funding for three national panels The aim was to assess whether a collaborative model of Consumer Research Panels could influence the pattern of consumer involvement in cancer research more widely.

Objectives n n n Develop a package of initiatives to foster consumer involvement in research, that can be adapted and replicated in other Cancer Networks Collaborate with three Cancer Networks to establish Consumer Panels for Research Develop and deliver a programme of ongoing recruitment, training, support and modus operandi that is sustainable in each cancer network Evaluate the methods of implementation and the influence of each Consumer Research Panel during its first six months in operation Develop and evaluate other related methods to empower consumers to influence areas of research within the cancer field by implementing a collaborative model of consumer involvement that may be replicated in other Cancer Networks

How the CRP came about n Adverts in local newspapers n Leaflets distributed in GP surgeries, leisure centres, bingo halls, hairdressers, citizens advice, libraries n Research nurses handed out leaflets in clinics n HYCCN Patient Involvement Groups (PIGs)

Initial Set Up n First meeting held on 1 st December 2004 n 11 members of the public attended

n The Clinical Lead for Research gave a presentation what she envisaged the CRP would do n A member of the North Trent CRP explained their experiences of setting up a group n Questions n Group informed there would be an interview process before membership to the group was confirmed

Thoughts and feelings after initial meeting n Majority still unsure what a CRP was n Those in attendance had expected there to be an interview process to join the panel n Expected a structured training programme to follow n Confusion as to what members’ role would be

Second meeting – 25 th January Training day n n n Now 12 interested CRP members Derek Stewart, who at the time worked for INVOLVE, talked about the NCRN and the strong need for public involvement in research Dr. Tony Stevens – presentation on cancer biology and the research cycle David Wilde – experiences from the development of the Sheffield CRP Claire Dawson (ICR) – health economics and quality of life

Thoughts, feelings and outcomes after 2 nd meeting All more confused as to what the CRP was and would do n Group was told Phil Cotterell (evaluation team) would be visiting soon to carry out a focus group with members n Next meeting provisionally booked for 7 th March n All unsure as to what was to come n

Third meeting – 7 th March 2005 Focus group session with evaluation team n n n Phil Cotterell carried out (enlarged) focus group Group dissatisfaction After initial focus group session meeting was informal, group talked over refreshments and left when they wanted Group informed the next meeting would be Critical Appraisal Skills Training, and would be arranged soon Terms of Reference discussed

State of play From January to March 2005, high loss rate from initial membership n Lack of direction and the feeling that no one was in charge and no work to do n PIG facilitator left (funding), handed over to Jane who initiated training and small items of work from INVOLVE website n Terms of Reference were finalised n

Terms of Reference Purpose To work in partnership the way research is prioritised, commissioned, undertaken, disseminated and used by theoretical and practical involvement of consumers with experience of cancer Who is a consumer? A consumer is someone who uses health services

Aims The key aims of the panel are: n to save lives n to be the consumer voice in the development, monitoring and evaluation of cancer research projects both local and national n to act as the consumer advisory body to those wishing to produce research for areas of cancer research n to act as a consumer advisory body to cancer, supportive and palliative care clinicians/researchers seeking to educate service and the general public about cancer issues

Structure The panel will consist of a maximum of 12 members with an additional list of interested parties Responsibilities The key responsibilities of the CRP members will be: n to participate in meetings, contributing to discussions, questioning professional representatives and contributing to decision- making debates n to represent the consumer voice on research project design and planning committees n to participate in training and mentoring new panel members and to actively promote the panel in study day and conference education programmes for professionals and consumer groups, both locally and on the national stage

Formal decision making will only be possible when there is a quorum of the panel. That quorum will be a minimum of 5 persons of the group. (This will not include any professional officer of the committee). New members will have a period of training and induction prior to formally participating in the activities of the panel. Officers of the committee will be the Chair. The Chairman post will be elected by the committee, for a period of two years, with the option of a further term (two years) if it is the wish of the committee in quorate. Apologies will be required from panel members who are unable to attend.

Key responsibilities of the Chairman will be: to manage the agenda of the panel meetings giving priority and timings to matters of discussion n to lead the panel discussions and to facilitate decision making, ensuring that appropriate levels of agreement are determined and recorded n to represent the views and decisions of the panel in other forums, in particular at the Humber & Yorkshire Coast Research Steering group n

Issues n n n Cochrane – Critical Appraisal Skills training was very well received but with the feeling it came too soon within the group’s development Formal training programme did not materialise and generally there was a feeling of dishonesty Finance issues arose early; honorarium No acting chair, no local research, no training Jane tried desperately to find chairperson, eventually got details of Dorothy and wrote to her asking if she would help move group forward

11 th July 2005 Dorothy attended meeting n Group explained to her the problems they were facing n Previous chairman of the Consumers Advisory Group for Clinical Trials (CAGCT) n All agreed, if Dorothy would accept, that we should draw on her previous experience and move forward with her as Chairperson n

New start – 12 th September 2005 n n n First meeting with Dorothy as Chairperson Monthly meetings and venue arranged Financial strategy organised Training needs discussed Group now confident of its position, Jane and Dorothy began networking with local research community Christmas lunch arranged

Peaks! n Engaging with research community led to various research proposals being forwarded to the group n Stand at the Hull York Medical School annual conference – very successful n Christmas lunch bonded the group n Feedback from researchers that our input was helpful and utilised

Input – n Questionnaire - questioning Professional Attitudes to Breast Cancer Follow-up in Primary Care n Review of research proposal: Experiences of being invited to take part in a cancer clinical trial: development of an internet resource as part of the Database of Individual Patient Experiences (DIPEx) n Review of research proposal: experiences of surviving cancer: development of an internet resource as part of the DIPEx experiences of health and illness n Review - service user ethical priorities in psychological research

n n n Member of planning group for INVOLVE’s revised Public Information Pack (PIP) for members of the public interested in getting involved in research Feedback re: The ‘Knowledge Resource’ – Dr. Tony Stevens Review of research proposal: Bladder Preservation Study Review of proposal: MRI prostate study Review of proposal: Co-morbidity in people over the age of 75 Review of proposal: Psychological aspects of additional procedures following breast reconstruction (our first national study)