The patient voice in health research…
…a journey from achieving presence to increased understanding, dialogue and influence
by Derek C Stewart
This perspective attempts to capture some of the events and facts in the years leading up to patient involvement in cancer research. It mainly covers the periods from the 1970s up to 2003. The comments reflect how active involvement, together with the cancer research community, is helping improve patient and carer experience of cancer diagnosis, treatment and care. Derek was interviewed for HealthTalk a few years ago and you can hear this interview here.
LinkedIn: Derek Stewart, OBE
A number of events led up to the establishment of actively involving patients in cancer research, some of which have a direct relationship whilst others are contextually part of the development of this movement. This paper attempts to place these events in some form of chronological order and provide references, where possible, for those interested in the primary source material.
Nowadays, the relationship between research, patient experience and the delivery of treatment and care is getting closer as is the active involvement of patients, carers and the public in each of those spheres. It would now seem highly unusual to attend any meeting about cancer services or about research without such active presence.
However, it is evident that gaining a presence was not a simple linear process but was a far more multi-facetted and complex affair. It was an accumulation of many contributing factors but especially the actions of individuals many of whom I have sought to identify and acknowledge. I apologise to those who I have missed out.
The involvement of patients in cancer research is not an isolated occurrence. It owes a great deal to various other movements for change and improvement. The movement to improve the rights of people with disabilities ‘no decision about us without us’ can trace its history to the civil rights and women’s rights campaigns of earlier years. In fact it is possible to match the elements of greater openness and transparency to many of the aspects of developing democracy.
It is though extremely difficult to identify a singular action or group that can be said to have more importance than another with perhaps the exception of the role women have taken in this struggle. It is women who have been a significant driving force in raising issues and taking action in matters of health and care.
An early example of women initiating the debate is recorded in a 1976 article on obstetric practice by Sir Iain Chalmers[i]. The Oxford Consumer Group had reported that the public made more adverse comments about maternity services than any other branch of the NHS.
It was consumer organisations, notably the Patients’ Association and the Association for Improvements in the Maternity Services that launched the challenge, which generated the discussion.
From its inception in 1978, lay members were an equal part of the National Perinatal Epidemiology Unit’s Advisory Group.
The Association for Improvement of Maternity Services convened a meeting of interested voluntary organisations and patient groups in 1986 to encourage them to support the Medical Research Council’s proposals for a randomised controlled trial of chorionic villus sampling in pregnancy. Representatives of these groups were involved in conducting and promoting this important trial [ii].
Throughout the 1980’s and 1990’s, more people with cancer were starting to ask questions about health, research and whether the ‘patient voice’ had a place in discussions. It is not coincidental that certain cancers were beginning to be treated more effectively and some people were living longer as a result. Independently and interdependently a number of health professionals were also keen to learn more about the patient experience and wanted to hear their voice at the table.
Women, especially those treated for breast cancer, were to my knowledge the first to begin asking questions about their treatments and the subsequent effects. These women also began to enquire about the quality of research. Letters and articles began to appear in medical journals and newspapers along with requests to be involved in the planning and prioritisation of research. A number of cancer charities developed from what was a support and advice approach towards greater advocacy on behalf of patients and lobbying on the cancer agenda.
These events were taking place against a background of other similar movements of involvement and empowerment. There are examples of similar developments especially in Mental Health, where patients had become actively involved with researchers.
The mental health survivors timeline at the Studymore website[iii] provides a broad range of examples of patient involvement. The Joseph Rowntree Foundation[iv] has a similarly useful selection of articles on active and involved citizenship across a range of settings and services.
The early 1980s also saw the rise of HIV and Aids. This in itself led, initially in the USA, to a different view of research where the patient communities knew as much or as little about the disease as many of the professionals. At that time Nick Partridge from the Terrence Higgins Trust in London worked with Professor Janet Darbyshire to demonstrate how patient communities could become actively involved in partnership with the Medical Research Council.
Consumers for Ethics in Research[v] (CERES), an independent charity set up 1989 helped promote informed debate about research and helped users of health services in the UK to develop and publicise their views on health research and new treatments.
It is interesting to note the use of the word ‘consumers’ being used because of the very nature of choice in research, which may not be necessarily the same for standard treatments.
In the world of research in cancer, a study[vi] published in The Lancet about complementary care at the Bristol Cancer Help Centre comparing women with breast cancer who went to Bristol for complementary therapy with those who did not (all had orthodox therapy), made some fundamental errors. The researchers’ conclusions (asserting that women who went to Bristol ‘fared worse’) were challenged in letters to The Lancet and was taken up in the media by a number of the patients in the study. The patients’ story of the campaign is recorded in the book Fighting Spirit, edited by Heather Goodare[vii] and led to criticism of the two sponsoring charities by the Charity Commission
Another document, Yesterday’s Women,[viii] catalogues the experiences and actions of a group of women with breast cancer who suffered long-term damage from radiotherapy.
“It seems that during the late 1970s and early 80s, within a particular group of hospitals in the UK, a number of factors combined to result in an increase in radiation-induced injuries. These risk factors are well understood today and are now carefully avoided. But it took a long time for this understanding to become public knowledge. The women initially found it very difficult even to get their problems recognized let alone to gain an understanding of how and why they had been damaged.
It wasn’t until as late as 1991 when one of the women, Lady Ironside, who took her doctor to court, that the women realized that there were others like them. Although Lady Ironside had to discontinue her case because of costs, her case was crucial to the development of R.A.G.E. – Radiotherapy Action Group Exposure.”
Extract from Yesterday’s Women
These are illustrative examples of how individuals can make a difference to improving the quality of care and of research but these were patients making their arguments from outside the funders, charities and other research organisations.
The National Health Service – Research & Development (NHS R&D) division was set up in 1991. Its first Director, Sir Michael Peckham, is understood to have given his commitment to involving consumers at all stages of the programme of research supported by the NHS.
In January 1992, The Lancet published a paper by Hazel Thornton, a cancer patient, entitled `Breast Cancer Trials: a patient’s viewpoint`.[ix] Following that, in The Lancet `Challenge of Breast Cancer Conference` held in Bruges in 1994 Hazel was one of three speakers invited to give a presentation in a session entitled `The patient`s role in research`.
The Charity Commission report on the Bristol research was published in 1994[x]:
Although the Commission’s inquiry found for the most part that the Cancer Research Campaign (CRC) and Imperial Cancer Research Fund (ICRF) had arrangements in place, their procedures for the supervision of research were insufficient to ensure that charity funds granted to independent researchers were properly controlled. The charities also lent their names to the publication of the research without ensuring that it was soundly based.’
The Charity Commission, 6 January 1994
Following her presentation in Bruges, the Consumers` Advisory Group for Clinical Trials (CAG-CT), a small, independent working group of professionals and patients, was established by Hazel Thornton together with breast surgeon, Professor Michael Baum. Its main aims were, firstly, to work directly with the profession on research protocols, and secondly, to advance public education about clinical trials[xi]. It’s work was not restricted to cancer.
Imogen Evans’ report on the conference in The Lancet in April 1994 stated ‘Women with breast cancer have led the way in showing how patients can contribute to many aspects of research, from trial design and participation to the raising of awareness and of funds…exclusion of patients from research decision-making will rapidly become the exception.’ [xii]
Hazel also reminds us of the role the pharmaceutical industry have played… “the history of Astra Zeneca`s interest in and support of the involvement of patients and the public (`citizens`) (`PPI`) in the research process goes back a long way. As an involved `patient` of 3 years standing at that time in 1994, I was invited by Zeneca Pharmaceuticals (as they then were) to give a paper at the Arimidex Training Workshop for their personnel, and assorted clinicians, from the UK and abroad, held at Ewloe, N. Wales, on Monday 10th October 1994, to the title “The patient`s perspective.” It was a very illuminating and useful experience, giving the opportunity to meet with and mingle with all present, and to give a viewpoint not generally sought at that time.
[I was invited on the strength of some Zeneca Pharmaceuticals` staff having been present at The Lancet`s Challenge of Breast Cancer Conference, held in Brugge in April 1994,where they had been present at an presentation on the topic of “The patient`s role in research” that I had been invited to give.]
So Astra Zeneca’s interest goes back a good few years by my reckoning.
In 1994/5 the CAG-CT obtained funding from the National Health Services Research and Development Group (NHS R&D) to undertake the project “Using a Consumers Advisory Group to increase accrual into trials”
The House of Commons Health Select Committee Report on Breast Cancer Services (HMSO July 1995) endorsed and welcomed the activity of the CAG-CT. Their recommendation 205 in their Report stated: “We believe that patient involvement at all stages of a trial, including initial design, is essential, and that initiatives such as the Consumers` Advisory Group for Clinical Trials are to be welcomed”[xiii].
Further developments in Mental Health in the mid 1990s included Diana Rose’s user-led research,[xiv] and the first service user development worker in 1996. The Capital Project Trust in 1997 also set up training for service users. The work of Peter Beresford and Service Users in Research (SURE) were helpful role models.
Around this period, Jane Bradburn, a researcher working at the College of Health approached Gillian Fletcher to collaborate on a project called Voices in Action. This project built on the ‘Voices’ training for maternity service users, that Gillian had developed with her colleague Elisabeth Buggins at the National Childbirth Trust. The Voices in Action training programme was taken up by Judith McNeill at Cancerlink to assist cancer patients to have their voices heard and later became known as Cancer Voices.
In 1996 the Director of NHS Research & Development Programme invited Ruth Evans, Director of the National Consumer Council, to chair a Standing Advisory Group on Consumer Involvement in NHS Research. The first report of the Group, entitled ‘Research: What’s in it for Consumers’[xv] was published in January 1998 and provides an excellent summary of events. A separate secretariat had been established as the Consumers in NHS Research Support Unit (later to become INVOLVE) with Bec Hanley as the first Director. A second report was published in March 1999.
The Context for Cancer Research
The formal structure through which oncologists met to coordinate, develop and peer review trials was the United Kingdom Coordinating Committee on Cancer Research (UKCCCR).
The Coordinating Committee on Cancer Research was initially set up in 1970 by the Medical Research Council (MRC), the Imperial Cancer Research Fund (ICRF) and the Cancer Research Campaign (CRC). It became UK wide in 1984 included the Leukaemia Research Fund (LRF). Breakthrough Breast Cancer, the Institute of Cancer Research, the Ludwig Institute, Marie Curie Cancer Care and Tenovus became associate members with the UK Health Departments, having observer status.
The UKCCCR was responsible for bringing together networks of cancer researchers with specific interests in different tumour site-specific groups in order to develop new ideas and proposals for clinical cancer treatment, prevention and screening research.
Hazel Thornton, as Chair of CAG-CT, was invited to attend the meeting on 15th May 1995 of the UKCCCR Breast Group. Hazel submitted reports of the work of the CAG-CT to them in April and October 1996 and again in October 1998.
Hazel recalled the value of meeting with Jack Cuzick, a medical statistician, for some enlightenment about the finer points of clinical trials following the first meeting.
Around 1997, the UK Breast Cancer Coalition requested representation on the UKCCCR Breast Cancer Group. Professor Michael Baum, Group Chairman was keen to find a means of enabling the patient voice to be heard in cancer research. Michael asked Jean Mossman to prepare an ‘options paper’ for discussion at the Breast Cancer Group. Jean attended the group in her role as Chief Executive of CancerBACUP having formerly been the UKCCCR Executive Secretary.
Jean Mossman’s paper, sadly no longer exists, but was well received. It raised concerns about ‘tokenism’ and outlined some suggestions reflecting on the success of the USA National Cancer Institute (NCI) – Director’s Consumer Liaison Group[xvi].
Following discussion at the Breast Group it was felt that the paper had relevance for UKCCCR as a whole and all of the Clinical Studies Groups. A proposal was therefore made to present the paper for further discussion within UKCCCR and its network Groups.
The BMJ published an article by Vicki Entwhistle on Lay perspectives – advantages for research in1998[xvii] was accompanied with a cartoon showing aliens sitting beside people with white coats.
In May 1999, the Prime Minister Tony Blair convened a ‘cancer summit’ at 10 Downing Street. Attendees at the ‘cancer summit’ included the major cancer research charities, the Department of Health and the MRC. The Cancer Research Funders’ Forum (CRFF) was founded following the summit. This would lead, in time, to the setting up of National Cancer Research Institute (NCRI).
In Sept 1999 the front cover of BMJ (No 7212) showed a couple dancing what seems to be the tango with the headline – Embracing patient partnership.
The Medical Research Council (MRC) also hosted a meeting, at the Clinical Trials Unit offices on Euston Road, about the dissemination of trial results. It was at this event that Dr Peter Twentyman, UKCCCR Executive Secretary, suggested that I might be interested in attending a workshop to explore the idea of consumer involvement specifically in cancer research. Other people were also invited to bring together a mix of people to discuss the possibility of establishing a group.
Cancerlink (later merged with Macmillan) and Jane Bradburn worked with Peter Twentyman to develop the agenda for the workshop.
An Exploratory Workshop
This workshop took place on 20th October 1999 and discussed how such a group might function. The agenda for that meeting was:
· What should be the Terms of Reference?
· What should be the membership of this Group?
· How should issues for consideration by the Group be identified?
· How should routes of communication for the Group be developed?
· How should the effectiveness of the Group be evaluated?
The workshop meeting was chaired by Sir William Asscher, Chair of UKCCCR and various discussions were led by Bec Hanley (Consumers in NHS Support Unit), Bob Sang (The Patients’ Association), Becky Miles (National Cancer Coalition), Jane Bradburn (Independent Consultant) and Prof Janet Darbyshire (MRC Clinical Trials Unit).
Dr Peter Twentyman helped by developing the Terms of Reference. These provided a clear statement regarding the definition of purpose for the group. Peter was an influential advocate on patient involvement within the existing structures at that time.
Another meeting was held a few weeks later to confirm the proposed Terms of Reference. I was selected as the founding Chair with Margaret King (a member of RAGE) becoming Vice-Chair.
The Terms of Reference for the Consumer Liaison Group:
· To advise on appropriate ways of involving consumers in cancer research.
· To work with other groups to develop policy and guidance for consumer involvement.
· To advise on recruitment of consumers to other committees/groups.
· To monitor consumer involvement and contribute to the evaluation of its impact.
The terms of reference firmly placed the group in a strategic advisory capacity, a national reference group able to establish a forum for that dialogue, and a point of contact on which to build other participatory initiatives.
Another very significant advocate of patient involvement was Julie Hearn who took over Peter’s role as UKCCCR Executive Secretary. It was Julie who was, almost single-handedly, responsible for putting the concept of a group into actual practice by setting up, organising and supporting us during the first formative years.
Margaret King, a breast cancer patient, showed us that it was possible for a person without a science or research background to sit with professionals in research meetings. It was Margaret, with her legal training, who led the way for others by asking if she could sit on the Breast Clinical Studies Group.
Margaret demonstrated that we could enter into a real and meaningful dialogue between patients and researchers as critical friends in discussions.
October 1999 saw the appointment of the first National Cancer Director with Prof Mike Richards becoming what is often referred to as the ‘Cancer Czar’.
In late 1999 the Medical Research Council (MRC) also decided to establish a Consumer Liaison Group to encompass a lay perspective on their work. The MRC advertised in the national press and received approximately 150 applications and Prof Ray Fitzpatrick chaired the Group. A number of the Royal Colleges set up similar initiatives around the same period.
One of the strengths in cancer was that many of the people who stepped forward had already participated in workshops delivered by Cancerlink to help them understand what patient and public involvement was about and how to get your voice heard.
A Funders Forum, a First Meeting, the All Party Report and a Cancer Plan.
The Cancer Research Funders Forum (CRFF) was set up as a result of the Downing Street summit and met for the first time in January 2000. Its role was to “consider strategic issues across the whole of cancer research, identify the obstacles to progress and forge collaborative approaches to tackle them”.
At this time only 1 cancer patient in every 26 was participating in a clinical study or trial calculated at 3.75% of the cancer patient population. One of the ambitious first targets was to double this figure.
The first meeting of the Consumer Liaison Group (CLG) was held in the early months of 2000 at Lincoln’s Inn Fields. The CLG brought together people with direct experience of cancer – patients and carers, with representatives from the funding cancer charities, scientists, researchers from both clinical and psycho-social aspects of research along with some from cancer support organisations.
In its initial format, the CLG had an equal number of professionals and patients/carers, including one person from the ethics service who saw herself as ‘Cancer Naïve’. Professor Janet Darbyshire, from the MRC Clinical Trials Unit, was instrumental in helping to explain much of the research terminology around randomisation, the different types of trials and the science. Janet’s involvement, as a respected and influential figure in the trials community, was a significantly important factor and helped build credibility.
During that first meeting Paul Nurse (ICRF), Gordon McVie (CRC) and John Toy (ICRF) came into the meeting to offer support and commitment to the members of CLG.
As an outcome of the first CLG meeting, Bec Hanley, Jane Bradburn, Claire Dawson and Val Jenkins kindly prepared a discussion paper on Consumer Involvement in Cancer Research.
Meanwhile, the All Party Parliamentary Science and Technology Committee published a comprehensive report in July: Cancer Research – A Fresh Look[xviii]:
Patient Involvement in Cancer Research
118. The central objective of most cancer research is to improve outcomes for cancer patients, be that in the short or long term. Several witnesses suggested that patients themselves should therefore be more closely involved in setting the research agenda. Cancerlink, for instance, said that “cancer patients and their carers should be involved in decisions about research at every level—from deciding on research priorities to application and dissemination”.
CancerBACUP argues that “research is primarily driven by scientists and oncologists, and does not always reflect the priorities of patients. Patients are interested not only in cures for cancer but also in cancer prevention, especially for future generations, and in quality of life issues”. Mr Fred Walker, a cancer patient and secretary of the Castleford and District Self Help Group, agreed that patients and their carers should be involved with research decisions, stating that this involvement should be more than “a tokenistic gesture”.
That such a large proportion of the funds for research are raised by patients and their carers through the research charities makes the case for their involvement in setting research priorities even stronger. The ICRF told us that it has to be accountable to its donors, who are kept fully up to date with directions and progress and that, together with the CRC, it is seeking ways of improving accountability to donors.
119. Scientific judgements on the timeliness, feasibility and promise of various research approaches are matters properly left to experts. We have been persuaded, however, that decisions over long-term strategies for tackling cancer can and should involve patients, carers and their representatives. In some instances this already happens.
Some research committees have patient representatives. Indeed, one of our witnesses, Gillian Speed, a cancer patient from Sheffield, is a patient representative on the North Trent Cancer Network Culyer Funding Team. Research Ethics Committees also have lay members. Patients should also be consulted in the design and delivery of clinical trials.
Moreover, as Cancerlink told us, patient involvement of this kind requires investment in training and support to build the capacity of patients and their representatives to take part in the research decision-making process.
We recommend that all Government-supported cancer research committees include patients’ representatives as full members and that the Government provides resources to ensure proper training and support for patients’ representatives.”
Extract from All Party Report: Cancer Research – A Fresh Look
None of these events ever occurs in isolation and many of the people involved in one meeting were concurrently members of other committees and groups. It is the nature of change in the NHS. The Department of Health for England was additionally reviewing the organisation and delivery of cancer services. This resulted in the National Cancer Director presenting The Cancer Plan in Sept 2000.
The Arrival of New Acronyms: NCRN, NCRI and CR-UK
The National Cancer Research Network (NCRN) and the National Cancer Research Institute (NCRI) were established in April 2001. The merger of the two charities the Imperial Cancer Research Fund (ICRF) and the Cancer Research Campaign (CRC) led to the launch of Cancer Research UK early in 2002.
One of the early tasks for the CLG Chair was becoming a member of the interview panel for the establishment of a network style infrastructure for cancer research. A similar clinical research network approach was already shown to be working effectively in Wales as were patient liaison groups in their main cancer hospitals.
This involvement at a strategic policy level marks it out as significantly different from the groups that only sought to influence the actual research agenda.
The outcome of that interview process was to appoint the team, led by Professor Peter Selby, from the University of Leeds and Leeds Hospital Trust to take on the task of coordinating a new National Cancer Research Network (NCRN).
The great success of this initiative has been written about elsewhere, but I wish to acknowledge my thanks to all those individuals who worked tirelessly to provide far more research opportunities for cancer patients throughout the United Kingdom. This Network certainly achieved more than the challenging targets set for it and became the model for the significant re-organisation of clinical research.
Concurrently, in cancer at that time, other discussions were taking place to form an Institute for cancer research. I would be pleased to say that the whole community at that time welcomed the concept with open arms, but there were too many meetings where logic was overridden with what seemed to be professional rivalries, reluctance to change and diversionary tactics.
It seemed clear us in the Consumer Liaison Group, that all these potentially new national structures might each want their own patient liaison groups which to all intents and purposes, at that time would probably have been the same few people.
The CLG initially developed its own induction programme for members which drew on the Cancerlink Voices approach. Cancerlink’s merger with Macmillan in 2001 also helped the creation of extensive support materials and a specific training programme for consumers getting involved.
The Alzheimer’s Society in 1999 launched their Quality Research in Dementia (QRD) model whereby their patients and carers would review proposals for research spending by the society. Once again, Jane Bradburn, Gillian Fletcher and Elizabeth Buggins produced an excellent training package in 2001 called The Critical Skills Appraisal Programme (CASP) to help, mainly, carers to support and develop their understanding and knowledge of research.[xix] Sally Crowe was one of the facilitators who managed the evaluations of this work.
Developments were also taking place at a local level. December 2001 saw the formal establishment of the North Trent Cancer Research Network – Consumer Research Panel[xx] by individuals such as Prof Sam Ahmedzai, Tony Stevens who were already active in involving people in research.
The result of the Cancer Research Funders’ Forum and internal UKCCCR discussions brought together the major funding bodies from government, charitable and private sectors into the National Cancer Research Institute (NCRI). It included cancer research charities, representatives of the Health Departments from England, Wales, Scotland and Northern Ireland, the pharmaceutical industry, and others. Its role was to provide a strategic oversight, identify gaps and opportunities, facilitate collaboration, and monitor progress.
The aim of the NCRI remains that of accelerating progress in cancer research in the UK for the benefit of patients. This initiative was stimulated by new ways of thinking within the cancer community and a desire amongst many for greater coherence and better efficiency. The CLG put forward a proposal that two patient representatives sit as Board members, and this was accepted during the second or third Board meeting.
Liam O’Toole who then led the secretariat for the NCRI played a vital role in supporting and enabling involvement by meeting the representatives before and after the Board meetings. This helped us understand the role and become more effective.
Our request was that time should be taken to consider how ‘consumer involvement’ might be best represented within these developments and how the recently formed UKCCCR CLG might grow.
A small ‘Think Tank’ was set up, chaired by Professor Peter Selby, NCRN Director, involving people from within and outside the Consumer Liaison Group. This group included Sir Iain Chalmers who was setting up the James Lind Alliance. Its purpose was to reflect and consider how to avoid duplication to cope with expansion and new structures and increase support and funding.
The outcomes of these meetings have enabled the growth of participation by agreeing certain actions that led to patients sitting on all of the Clinical Studies Groups.
This next stage in 2003 brought in Tony Stevens as the national development lead for consumer involvement[xxi]. His work in Sheffield with a local research panel and thorough knowledge of involvement enabled the CLG to move forward and achieve the targets set by the ‘think tank’ of having two members on every NCRI Clinical Studies Group, having a dedicated CLG budget from which attendance fees could be paid, and for beginning to consider how patient involvement could be evaluated in practice. It also soon marked my withdrawal from the role of Chair in 2004 with Roger Wilson taking up the post thereafter to be followed by Dave Ardron in 2008.
Another success at this time was the establishment of three Consumer Research Panels working at local Network level. Following Tony Stevens’ departure, Karen Inns took on the post as national PPI Lead and played the significant role in developing the expansion of the membership, formalising the structures by which people became involved and facilitated almost all of the support.
In early 2005 the CLG underwent a review by an international panel. The response of the panel, which included two people active in managing patient involvement in the USA, was full of praise for what had been achieved in a relatively short period of time. The panel members from the USA were particularly complimentary about the reach into strategic decision forums that was being achieved in the UK, something which they felt had been missed in the USA.
These chronological events mark many of the important moments and acknowledge a number of the individuals who played a role in setting up and establishing what we know today as the NCRI/N Consumer Liaison Group. A separate document is being produced, by Sheila Fisher, which will provide other viewpoints of how the CLG has developed.
Having now managed to collate these events chronologically it is now my intention to write a more personal account of this involvement allowing further reflection on the thinking and approaches that were taken.
Acknowledgments to Heather Goodare, Hazel Thornton, Kristina Staley, Bec Hanley, Jean Mossman, Michael Baum, Julie Hearn, Val Jenkins, Imogen Evans, April Matthews, Philippa Yeales, Roger Wilson, David Ardron, Richard Stevens, Iain Chalmers, et al
Selected Chronology of key events in cancer
|1989||Consumers for Ethics in Research (CERES)|
|1990||Sept||Bristol Cancer Help Centre research article in The Lancet|
|1991||Radiotherapy Action Group Exposure (R.A.G.E.) founded|
|1994||Sept||Consumers’ Advisory Group for Clinical Trials (CAG-CT) established|
|Charity Commission Report – critical of Cancer Charities over the Bristol research|
|1995||Apr||Commissioning Cancer Services Report published– by Kenneth Calman & Deirdre Hine, Chief Medical Officers of England and Wales respectively|
|1996||Consumers in NHS Research set up by NHS R&D|
|Challenging Cancer Report|
|1998||Jan||NHS R&D Report – Research: What’s in it for Consumers|
|Feb||CAG-CT & Marie Curie Cancer Care Conference – Towards Public Understanding of Clinical Trials|
|Oct||USA National Cancer Institute – Director’s Consumer Liaison Group established|
|1999||May||Prime Minister’ Tony Blair – Cancer Summit at 10 Downing St|
|July||Alzheimer’s Society – Quality Research in Dementia programme|
|Oct||Prof Mike Richards appointed as National Cancer Director|
|Oct||UKCCCR Planning Workshop for Consumer Liaison Group|
|Oct||CAG-CT/Marie Curie Cancer Care Conference – Information provision – how can we get it right?|
|2000||June||UKCCCR Consumer Liaison Group first meeting|
|MRC Consumer Liaison Group – now Public Panel|
|Jul||Cancer Research-A Fresh Look: All Party Science & Technology Report|
|Sept||The Cancer Plan – published|
|2001||Apr||National Cancer Research Network established|
|National Cancer Research Institute established|
|Cancerlink merges with Macmillan Cancer Relief|
|Dec||North Trent Consumer Research Panel established|
|2002||Feb||Cancer Research UK launched as the merger of CRC and ICRF|
|May||All Party Progress Report[xxii]|
|Oct||NCRI Strategic Analysis review of cancer research[xxiii]|
|2003||Jan||Bioscience Innovation and Growth Team – BIGT Report[xxiv]|
|2005||Oct||First NCRI Conference|
|2006||Jan||Best Research for Best Health[xxv] – a new national health research strategy|
|Macmillan becomes Macmillan Cancer Support|
|2007||International Review of CLG|
|Dec||Cancer Reform Strategy|
|2008||CancerBacup merges with Macmillan|
|2011||Jan||Improving Outcomes – a strategy for cancer|
CAG-CT Consumers Advisory Group for Clinical Trials
CLG Consumer Liaison Group
CRFF Cancer Research Funders Forum
CRC Cancer Research Campaign
CRUK Cancer Research – United Kingdom
ICRF Imperial Cancer Research Fund
LRF Leukaemia Research Fund
MRC Medical Research Council
NHS R&D National Health Service – Research & Development
NCI National Cancer Institute
NCRI National Cancer Research Institute
NCRN National Cancer Research Network
RAGE Radiotherapy Action Group Exposure
UKCCCR United Kingdom Coordinating Committee on Cancer Research
Consumers Workshop Participant List
Held on 20th Oct 1999
Sir William Asscher Chairman, UKCCCR
Dr Joan Box MRC Head Office
Ms Jane Bradburn R&D Consultant
Ms Judith Brodie CancerBacup
Ms Cath Dillon Cancerlink
Mrs Barbara Elliot Roy Castle Lung Foundation
Professor Janet Darbyshire Medical Research Council
Ms Bec Hanley NHS Support Unit
Ms Julie Hearn Deputy Executive Secretary, UKCCCR
Mr Ernest Jones Roy Castle Lung Foundation
Ms Jean King CRC Head Office
Mrs Margaret King UK Breast Cancer Coalition
Ms Jennifer Layburn Cancerblackcare
Ms Kate Law CRC Head Office
Ms Becky Miles National Cancer Alliance
Ms Elizabeth Mitchell MRC Head Office
Mr Roy Nixon Prostate Cancer Support Association
Dr Max Parmar MRC Clinical Trials Unit
Ms Helen Quinn Colon Cancer Concern
Mr Bob Sang Patients Association
Mr Derek Stewart Nottingham Health Authority Patients Forum
Ms Hazel Thornton Consumers’ Advisory Group for Clinical Trials
Dr John Toy ICRF head Office
Dr Peter Twentyman Executive Secretary, UKCCCR
Dr Suzie Wilkinson Marie Curie Cancer Care
Original Membership of Consumer Liaison Group
Mrs Hazel Barton – breast cancer patient
Mr David Hoe-Richardson – prostate cancer patient
Mrs Cheryl Ireland – ovarian cancer patient
Mrs Margaret King – breast cancer patient
Mr Jonathan Koffman – Hodgkin’s disease patient
Mr Roy Nixon – prostate cancer patient
Mr Derek Stewart – larynx cancer patient
Mr Keith Taylor – kidney cancer patient
Mrs Barbara Elliot – lung cancer carer
Mrs Joyce Struthers – Community Health Council
Mrs Shirley Williams
Representatives of Support Organisations
Ms Cath Dillon – Cancerlink
Ms Tracy Williams – CancerBacup
Cancer Research – Professionals
Professor Janet Darbyshire – Medical Research Council
Ms Claire Dawson – Institute of Cancer Research
Dr Val Jenkins – Psychosocial Oncology Group
Ms Jane Bradburn – Freelance consultant – Voices in Action
Ms Bec Hanley – Director, Consumers in NHS Research
Dr Peter Twentyman
Ms Julie Hearn
[i] Chalmers I. British debate on obstetric practice. Pediatrics 1976;58:308-312
[ii] Chalmers I. Minimising harm and maximising benefit during innovation in healthcare:controlled or uuncontrolled experimentation? Birth 1986; 13:155-64
[iii] Mental health and survivors’ movements and context: http://studymore.org.uk
[v] Consumers for Ethics in Research (CERES)
[vi] Survival of patients with breast cancer attending Bristol Cancer Help Centre
Prof C. E. D. Chilvers MSc, F. S. Bagenal BSc, D. F. Easton MA, E. Harris MSc and Prof T. J. McElwain FRCP The Lancet 8th Sept 1990
[vii] Fighting Spirit: the stories of women in the Bristol breast cancer survey; Heather Goodare (Editor); foreword by Sheila Hancock. Published by Scarlet Press: London 1996
ISBN 1-85727 033 9
[viii] Yesterday’s Women: The story of RAGE; Researched and written by Bec Hanley and Kristina Staley, TwoCan Associates. Commissioned by Macmillan Cancer Support.
[ix] Breast cancer trials: a patient`s viewpoint. Lancet 1992;339:44-45 from Hazel Thornton
[xi] Alliance between medical profession and consumers already exists in breast cancer Letter to the BMJ 316:148 (Published 10 January 1998) by Hazel Thornton, Chairman CAG-CT http://www.bmj.com/content/316/7125/148.3.full
[xii] Report by Imogen Evans, The Lancet, Vol 343, p. 1086, April 30, 1994
[xiii] House of Commons Health Select Committee Report on Breast Cancer Services HMSO, July 1995. p.lvi.para 205.
[xiv] User and Carer Involvement in Change Management in a Mental Health Context: Review of the Literature Report to the National Co-ordinating Centre for NHS Service Delivery and Organisation R&D (NCCSDO) November 2002 (revised November 2003) prepared by Diana Rose Pete Fleischmann Fran Tonkiss Peter Campbell Til Wykes http://www.sdo.nihr.ac.uk/files/project/17-final-report.pdf
[xv] Research: What’s in it for Consumers – report published by NHS R&D
[xvii] Lay perspectives: advantages for research. BMJ, 1998; 316: 463-6 Entwhistle et al
[xviii] Cancer Research – A Fresh Look, published by the All Party Science & Technology Committee – July 2000 http://www.publications.parliament.uk/pa/cm199900/cmselect/cmsctech/332/33202.htm
[xix] Critical Appraisal Skills Programme (CASP) Voices in Action, College of Health – J Bradburn, G Fletcher, E Buggins
[xx] North Trent Cancer Research Network – Consumer Research Panel
COLLINS, K., STEVENS, T. and AHMEDZAI , S. H. (2007). Can consumer research panels form an effective part of the cancer research community? Clinical effectiveness in nursing, 9 (3-4), 112-118. http://shura.shu.ac.uk/1384/
[xxi] Consumer Involvement in Cancer Research in the United Kingdom: The Benefits and Challenges – Stevens and Wilde
[xxii] Select Committee First Report following Fresh Look 4th March 2002 http://www.publications.parliament.uk/pa/cm200102/cmselect/cmsctech/444/44402.htm
[xxv] Best Research for Best Health – a new national health research strategy 25th Jan 2006 http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4127127