Since the early 1990s efforts have been growing to set research agendas in discussion with clinicians, patients and the wider public. Whilst clinicians may be expected to have an awareness of research and the need for research to inform their decisions as part of their professional knowledge, the same cannot be assumed for patients or the wider public. Engaging patients and the wider public can be achieved through conventional social research about their experiences of health, ill-health and treatment followed by analyses and interpretations by the researchers to draw out the implications for research agendas. A more direct engagement of patients and the wider public with research has policy support. This relies less on researchers’ analyses and interpretations, but more on patients’ and the wider public’s understanding of the need for research to inform decisions about health care.
The James Lind Alliance has been funded by the Medical Research Council (MRC) and the Department of Health to foster discussion among patients and clinicians (doctors, nurses, therapists, and others who treat patients) about variations in health care practice and the related unanswered research questions about the effects of care. The Alliance has assembled an initial bibliography of reports of studies comparing patients’ and clinicians’ research questions and outcome priorities with researchers’ priorities or activities relevant to this aim.
The aims of this scoping study were to:
- Extend the bibliography of the James Lind Alliance
- Describe the scope of the literature addressing patients’ and clinicians’ priorities for research and outcomes for assessing the effects of treatments
The primary objectives were to search systematically for additional reports:
- Comparing patients’ and researchers’ research priorities for research or outcomes for assessing the effects of treatments
- Comparing clinicians’ and researchers’ research priorities or outcomes for assessing the effects of treatments
The secondary objectives were to search systematically for reports of:
- Comparing patients’ and clinicians’ research priorities or outcomes for assessing the effects of treatments
- Describing patients’ priorities for research or outcomes for assessing the effects of treatments
- Describing clinicians’ priorities for research or outcomes for assessing the effects of treatments
- Advocating or describing patient involvement methods in setting research priorities
To identify relevant studies we examined the references of nine papers from the original bibliography, conducted electronic searches for publications by key authors and for citations of key papers, and searched the journal Health Expectations by hand.
An electronic search strategy combining keywords and text terms for outcomes and research priorities held by patients, the public or clinicians was developed for MEDLINE and adapted to four other commercially available databases: EMBASE (a biomedical and pharmacological database), PsycINFO (for abstracts of behavioural sciences and mental health literature), CINAHL (covering nursing and allied health), AMED (Allied and Complementary Medicine database), and the Cochrane Methodology Register.
Between us, we screened the titles and abstracts of reports published over the past ten years. We were over-inclusive in the first instance, discussed difficulties in discriminating between relevant and irrelevant studies and then one of us inspected the included studies a second time.
Relevant studies were described as in the categories described under ‘Aims’, above. In addition, we have compiled a bibliography of other studies for example, those describing methods for eliciting priorities, or promoting such work. These bibliographies will be relevant in future for preparing systematic reviews of research in this field. For example, we are aware of two reviews addressing patient and public perspectives on research agenda setting.
We identified citations and abstracts of studies that appear to address the priorities of patients, clinicians or researchers, in a variety of combinations.
|Focus of title/ abstract
|Patients' priorities for research or outcomes for assessment compared with researchers’ priorities
|Clinicians’ priorities for research or outcomes for assessment compared with researchers’ priorities
|Patients’ and clinicians’ priorities for research or outcomes for assessment
|Patients’ priorities for research or outcomes for assessment
|Clinicians’ priorities for research or outcomes for assessment
|Reports advocating or describing methods for patient involvement in prioritising research or outcomes for assessment
From the information available in the abstracts, none of these appears to address the priorities of both patients or the public and clinicians, and also take into account researchers’ priorities.
Six appear to be comparative studies of research agendas and patients’ priorities. A further three comparative studies address researchers’ and clinicians’ priorities. Forty-two reports address patients’ and clinicians’ priorities but not necessarily researchers’ priorities. Ninety-six reports address patients’ or the public’s priorities, but not necessarily clinicians’ priorities or researchers’ priorities. One hundred and fifty six reports address clinicians’ priorities, but not necessarily patients’ priorities or researchers’ priorities.
Seventy-one reports advocate or describe patient involvement in setting research priorities.
This scoping study identified a substantial literature addressing patients’ and clinicians’ research priorities that has not been included in previous systematic reviews. Further studies may be identified through searching studies citing those already identified, or by searching the reference lists of those already identified. Within this literature there is likely to be informative evidence addressing therapeutic questions and treatment outcomes of importance to patients and clinicians.
Studies identified address the priorities of clinicians or patients, either separately or compared with each other or with researchers or research funders. More could be learnt from appraising and synthesising this evidence. Not only will this literature inform researchers and funders of patients’ and clinicians’ priorities, it will also describe methods employed to elicit these priorities developed in different settings with different groups: who was approached, how they were engaged, and how their views were analysed.
- Making the report and citations publicly available through the JLA web site
- Extending the James Lind Alliance Bibliography by retrieving the full reports of the studies identified and if they appear relevant, make the citations publicly available through the James Lind Alliance;
- Building on this scoping study with a systematic review; starting with duplicate independent screening of the downloaded citations and abstracts, then retrieving and re-screening the full reports of potentially relevant studies before describing the studies in terms of their health topic focus, clinician and/ or patient involvement, and methods employed to elicit priorities.
- Comparing patients’ and the wider public’s research priorities identified within this literature with social researchers’ conclusions about research priorities for health care and assessment derived from their studies of patients’ experiences of health, ill-health and health care.
This report should be cited as: Oliver S, Gray J (2006) A bibliography of research reports about patients', clinicians' and researchers' priorities for new research. London: James Lind Alliance.