How can health service users contribute to the NHS research and development programme?
BMJ 1995; 310 doi: https://doi.org/10.1136/bmj.310.6990.1318 (Published 20 May 1995) Cite this as: BMJ 1995;310:1318
- Sandra R Oliver, antenatal teachera
- Correspondence to: Dr S R Oliver, The White Cottage, Crampshaw Lane, Ashtead, Surrey KT21 2UD.
The National Childbirth Trust, along with other groups of health service users, is working with health professionals and researchers in planning clinical trials, setting priorities for research, systematically reviewing research reports, and getting research findings into practice. User groups may bridge the gap between the public and researchers by explaining research issues to a wide audience, presenting the needs and views of health service users to the research community, and suggesting how members of the public may be approached for their views directly. Service users recognise their need for training and support, and they call for development and evaluation of this work.
Background
The NHS research and development programme is trying to reflect the concerns of consumers throughout its work.1 This implies inviting input from health service users at all stages, from setting the research agenda to the planning and execution of projects, and reporting their findings.
While the NHS has been developing its research and development strategy the National Childbirth Trust has been raising awareness of research issues among its 56000 members and consulting them, as well as representing health service users in research projects or programmes. Writing as a member of the National Childbirth Trust's Research and Information Group, I shall discuss the difficulties we have met in making such contributions.
We have found that “too often what women have to say about their experiences is either ignored, forgotten or dismissed. … [Their] views must be publicised and specifically drawn to the attention of health professionals, policy makers and researchers, and the implications which flow from them for the care of women during pregnancy and childbirth should be emphasised.”2 With this in mind the trust has undertaken surveys on women's experiences of epidurals, postnatal infection, rupture of membranes in labour, and the perineum in childbirth.3 4 5 6 All of these have focused on women's personal experiences and views of their care.
Policy statement: the importance of evaluation in maternity care
The National Childbirth Trust aims to enable every parent to make informed choices.
We are concerned that important aspects of maternity care have not always been thoroughly evaluated and therefore choice is often based on incomplete or inaccurate information.
The NCT recommends that all new procedures and treatments are introduced as research studies which are subjected to rigorous evaluation before being adopted more widely. Current forms of care which have not been adequately investigated for their benefits, risks, and side effects should, where possible, be subjected to equally stringent evaluation and open debate.
While parents may be guided by research evidence, individuals making decisions will be influenced by their own beliefs, wishes and priorities.
Recently we have been finding more opportunities for making women's views known to health professionals, policy makers, and researchers. Our efforts have not been evaluated formally, but our experience may be useful to others.
Research policies
The Health Select Committee report on maternity services (the Winterton report),7 criticised the lack of evaluation and audit in maternity care and concluded that “too many fasionable interventions” in care during childbirth had been introduced without sufficient evaluation. The National Childbirth Trust responded by developing a policy statement on the importance of evaluation in maternity care (box) and making a commitment to encouraging and supporting research in pregnancy, childbirth, and early parenthood (box).
Recognising the benefits of reliable evidence about the effects of health care, the National Childbirth Trust and other consumer groups were quick to adopt Effective Care in Pregnancy and Childbirth, a collection of systematic reviews of published and unpublished research projects from 1950 onwards, and its accompanying summary paperback.8 9 10 The Cochrane Collaboration, which produces and updates these and other reviews, invites constructive criticism to improve its working practices and final products and encourages input from health service users.11 The National Childbirth Trust has offered ideas for making the reviews more relevant and accessible to lay readers.12 13
Supporting clinical trials
Lay support of clinical trials in pregnancy and childbirth was led by the Association for Improvements in Maternity Services in 1985 when, with other organisations, it supported the Medical Research Council's proposal to compare chorionic villus sampling with amniocentesis in a randomised controlled trial.14 The National Childbirth Trust's council debated whether public endorsement would unduly influence individual women invited to enter the trial rather than encouraging them to make an informed decision alone. It decided that “to press for randomised controlled trials without openly acknowledging the need for participation in those trials is not a tenable position.”15
Since then the trust has supported controlled trials on the use of low dose aspirin in pregnancy and treatments for inverted and non-protractile nipples,16 17 and it is currently supporting trials of the use of antibiotics for threatened preterm labour, of extracorporeal membrane oxygenation, and of management of the perineum at delivery.
Before committing the trust to supporting a trial we scrutinise published reports of research and the protocol to decide whether the investigation is likely to address questions which we consider important and whether we have any reservations about the ethics of the study, including its source of funding. Questions that have arisen include the implications of relying on scarce resources and the efforts of lay volunteers publicly to support trials; the legal responsibilities of lay members of advisory groups or steering committees; and whether the indemnity offered to NHS staff should be extended to cover lay members.
Research issues
A wave of consultation exercises on research issues began with a request for suggestions from the task force developing a strategy for research in nursing, midwifery, and health visiting. It found that “many effectively organised user and consumer groups have structures to identify research priorities and concerns. As public knowledge and interest in health matters has grown, patients demand more information and are less prepared to accept professional judgments without explanation or consultation. Their expertise should be an integral part of the process.”18
Naturally we were delighted that the efforts of consumer groups were welcomed, but representing consumer perspectives is not easy and not always satisfactory. To elicit the views of our members we raised research issues in our quarterly journal, New Generation, at the National Childbirth Trust's members' conference, and in a mailing to the 350 branches of the trust, asking them to discuss which subjects they would like to see investigated more thoroughly. Topics recommended for further research included a wide range of issues: some high technology practices, some established practices, some new ideas, and many variations on the theme of patient information and support.
Summary of policy paper, March 1993
The National Childbirth Trust should:
subscribe to the Cochrane Pregnancy and Childbirth Database
recognise rigorous research as an integral part of the maternity services and increase awareness of research among health service users
publicise and debate research in New Generation and other journals, both popular and professional
cooperate with clinical trial collaborators in the development of a strategy for informing and supporting those who will be invited to participate in a trial
represent maternity service users through research planning committees, ethics committees, and research steering committees
call for research which aims to enhance short and long term physical, social, and emotional good health
promote its policy statement on the importance of evaluation in maternity care
present evaluative research for maternity care practices to health service users so they have sound evidence on which to base their decisions in personal maternity care and requests for policy changes
encourage health service users to consider seriously invitations to enter clinical trials
The National Childbirth Trust should encourage health professionals:
to recognise rigorous research as an integral part of the maternity services
to evaluate the quality of information they offer their clients, differentiating between information based on uncontrolled experimentation and information based on controlled, evaluative research
to undertake rigorous research
to consult lay representatives, including the NCT, when planning, conducting, and reporting research and implementing the findings
to implement or discontinue practices in line with the findings of well designed research
We restricted this wide ranging list to five “burning issues” for a national study to establish priorities for research in midwifery.19 Suggestions were scored by a panel of 10 National Childbirth Trust members, half of whom had a particular interest in research. Our final choices were: methods for effective communication and support to meet individual needs; methods for preserving an intact perineum; attitudes of midwives to breast feeding; midwifery training on breast feeding; and withholding food and drink in labour.
Since then, enthusiasm for consulting consumers has grown. In quick succession we have been asked to identify priorities for research in care at the primary-secondary care interface, health technology assessment (in the acute sector, for population screening, and in primary and community care), maternity care, and systematic reviews. Each task needs thinking time, discussion time, library resources, and administrative support—all of which diverts energy and resources away from our primary purpose of offering information and support to the public.
Canvassing opinion on health care research is a serious challenge, even with an established communication network reaching a nationwide membership.20 Other consumer groups may fare better if they depend less heavily on volunteers or have previous experience of effective canvassing methods. They may fare worse if they lack library resources or administrative support.
More satisfactory for consumers are consultation exercises that allow discussion of the issues both among consumers and with health professionals or researchers. But involving service users does not guarantee their voice being heard.
Training and support
The Greater London Association of Community Health Councils is planning to strengthen the voice of maternity services by supporting lay members of maternity service liaison committees, funded by the Department of Health's Development Fund for Changing Childbirth. Consumer involvement in research could also be strengthened by relevant training and support. The getting research into practice (GRiP) project,21 which has developed critical appraisal workshops to help purchasers make use of reliable research, has already adapted workshops for National Childbirth Trust members such as antenatal teachers and breast feeding counsellors.
Consulting public opinion may be more effective if consumer groups are able to work with those more experienced in canvassing methods. Access to specialist libraries and support for health service users wishing to express their views in professional journals would open the debate about research issues much wider.
Getting research into practice
Gathering and publishing reliable evidence does not ensure that health service users are offered optimal care.9 The trust's latest survey report, The Perineum in Childbirth, found discrepancies between some midwifery practices and research findings.6 This inspired the trust's strategy for putting research into practice22 and gave us experience to offer the North Thames Research Implementation Group and the advisory group to the Central Research and Development Committee on priorities for research in implementation.
Conclusions
Consumer groups are well placed to bridge the gap between the public and researchers by explaining research issues to a wide audience, by presenting the needs and views of health service users to the research community, and by suggesting how members of the public may be approached for their views directly. Funding, practical support, and training for consumer groups could help in the development and evaluation of this work.
We have found that the most fruitful partnerships result when time is allowed for health service users to understand the history, organisation, and aims of the research and for researchers to understand the experiences, organisation, and aims of health service user groups. Working together, we can look for better ways to share information, opinions, decision making, and responsibility.
While the views expressed here are my own, I am very grateful to Leonie Allday, Iain Chalmers, Vikki Entwistle, Gill Gyte, and Eileen Hutton for their encouragement and constructive criticism.