Humber & Yorkshire Coast Cancer Research Network

CONSUMER RESEARCH PANEL (CRP)

Pitfalls and Peaks –

The formation of a Consumer Research

Panel (CRP)

BackgroundThe NHS Cancer Plan (2000) set out the first comprehensive national cancer programme. It Identified four aims:

to save more lives to ensure cancer patients received the most

appropriate treatments, care and support to tackle geographical and socio-economic

inequalities in cancer care and treatment outcomes

to develop the cancer workforce and increase research

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 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 Adverts in local newspapers

Leaflets distributed in GP surgeries, leisure centres, bingo halls, hairdressers, citizens advice, libraries

Research nurses handed out leaflets in clinics

HYCCN Patient Involvement Groups (PIGs)

Initial Set Up

First meeting held on 1st December 2004

11 members of the public attended

The Clinical Lead for Research gave a presentation - what she envisaged the CRP would do

A member of the North Trent CRP explained their experiences of setting up a group

Questions

Group informed there would be an interview process before membership to the group was confirmed

Thoughts and feelings after initial meeting Majority still unsure what a CRP was

Those in attendance had expected there to be an interview process to join the panel

Expected a structured training programme to follow

Confusion as to what members’ role would be

Second meeting – 25th JanuaryTraining day

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 2nd meeting

All more confused as to what the CRP was and would do

Group was told Phil Cotterell (evaluation team) would be visiting soon to carry out a focus group with members

Next meeting provisionally booked for 7th March All unsure as to what was to come

Third meeting – 7th March 2005 Focus group session with evaluation team

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

Lack of direction and the feeling that no one was in charge and no work to do

PIG facilitator left (funding), handed over to Jane who initiated training and small items of work from INVOLVE website

Terms of Reference were finalised

Terms of Reference

PurposeTo work in partnership the way research is prioritised, commissioned, undertaken, disseminated and used by the theoretical and practical involvement of consumers with experience of cancer

Who is a consumer?A consumer is someone who uses health services

AimsThe key aims of the panel are: to save lives to be the consumer voice in the development,

monitoring and evaluation of cancer research projects both local and national

to act as the consumer advisory body to those wishing to produce research for areas of cancer research

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

StructureThe panel will consist of a maximum of 12 members with an additional list of interested parties

ResponsibilitiesThe key responsibilities of the CRP members will be:

to participate in meetings, contributing to discussions, questioning professional representatives and contributing to decision- making debates

to represent the consumer voice on research project design and planning committees

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

to lead the panel discussions and to facilitate decision making, ensuring that appropriate levels of agreement are determined and recorded

to represent the views and decisions of the panel in other forums, in particular at the Humber & Yorkshire Coast Research Steering group

Issues

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

11th July 2005

Dorothy attended meeting Group explained to her the problems they were

facing Previous chairman of the Consumers Advisory Group

for Clinical Trials (CAGCT) All agreed, if Dorothy would accept, that we should

draw on her previous experience and move forward with her as Chairperson

New start – 12th September 2005

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!

Engaging with research community led to various research proposals being forwarded to the group

Stand at the Hull York Medical School annual conference – very successful

Christmas lunch bonded the group

Feedback from researchers that our input was helpful and utilised

Input – Questionnaire - questioning Professional Attitudes to

Breast Cancer Follow-up in Primary Care

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)

Review of research proposal: experiences of surviving cancer: development of an internet resource as part of the DIPEx experiences of health and illness

Review - service user ethical priorities in psychological research

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)

a prospective new member

It’s not all serious…

getting ready for a last minute television interview

New arrivals to the team

Latest project

Decision to write guidelines on how to review research proposals

Due to lack of funds the charge is £2.00 per booklet

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