Listening to the views of people affected by cancer about cancer research: an example of participatory research in setting the cancer research agenda

AIM: The study 'Listening to the Views of People Affected by Cancer About Cancer Research' is currently exploring the views people affected by cancer have about cancer research and identifying their research priorities. Integral to this is the broader aim of ensuring an effective, collaborative participation of patients and carers in the design and conduct of the study. On the basis of experiences with the study to date, the latter is explored in this paper. DESIGN: The study adopts a 'participatory research' approach entailing the formation of a 'reference group' and a subsequent patient and carer co-researcher group. Patient and carer members of these groups were identified through the patient forums of UK cancer networks and by approaching 'hard to reach' representatives directly through community groups and participating study sites. FINDINGS: Experiences from this study illustrate that a 'participatory research' approach is appropriate in engaging patients and carers in the research process. Establishing a group of people affected by cancer in the study was found to be particularly effective in enhancing the design and conduct of the research. CONCLUSIONS: 'Participatory research' offers an effective means of involving patients and carers throughout the research process, thus strengthening the relevance and appropriateness of research findings and methods.     

Research priorities in occupational health in Italy

OBJECTIVE—To find a broad consensus on research priorities and strategies in the field of occupational health and safety in Italy.
METHODS—A two phase questionnaire survey was based on the Delphi technique previously described in other reports. 310 Occupational safety and health specialists (from universities and local health units) were given an open questionnaire (to identify three priority research areas). The data obtained from respondents (175, 56.4%) were then used to draw up a list of 27 priority topics grouped together into five macrosectors. Each of these was given a score ranging from 1 (of little importance) to 5 ( extremely important). With the mean scores obtained from a total of 203 respondents (65.4%), it was possible to place the 27 topics in rank order according to a scale of priorities.
RESULTS—Among the macrosectors, first place was given to the question of methodological approach to research in this field, and for individual topics, occupational carcinogenesis and quality in occupational medicine were ranked first and second, respectively. The question of exposure to low doses of environmental pollutants and multiple exposures ranked third among the priorities; the development of adequate and effective approaches and methods for worker education and participation in prevention was also perceived as being an important issue (fourth place).
CONCLUSIONS—This study (the first of its kind in Italy) enabled us to achieve an adequate degree of consensus on research priorities related to the protection of occupational health and safety. Disparities in the mean scores of some of the issues identified overall as being research priorities, seem to be linked both to geographical area and to whether respondents worked in local health units or universities. This finding requires debate and further analysis.


Keywords: research priorities; occupational health; strategies     

Occupational health research priorities in Malaysia: a Delphi study

OBJECTIVES—As part of a consultancy project on occupational health, the Delphi method was used to identify research priorities in occupational health in Malaysia.
METHODS—Participation was sought from government ministries, industry, and professional organisations, and university departments with an interest in occupational and public health. Two rounds of questionnaires resulted in a final list of priorities, with noticeable differences between participants depending on whether they worked in industry or were from government organisations.
RESULTS—The participation rate of 71% (55 of 78) was obtained for the first questionnaire and 76% (72 of 95) for the second questionnaire. The participants identified occupational health problems for specific groups and industries as the top research priority area (ranked as top priority by 25% of participants). Ministry of Health participants placed emphasis on healthcare workers (52% ranking it as top priority), whereas those from industry identified construction and plantation workers as groups, which should be accorded the highest priority. Evaluation of research and services was given a low priority.
CONCLUSIONS—The priorities for occupational health determined with the Delphi approach showed differences between Malaysia, a developing country, and findings from similar European studies. This may be expected, as differences exist in stages of economic development, types of industries, occupational activities, and cultural attitudes to occupational health and safety. Chemical poisonings and workplace accidents were accorded a high priority. By contrast with findings from western countries, workplace psychosocial problems and musculoskeletal injuries were deemed less important. There also seemed to be greater emphasis on adopting interventions for identified problems based on experience in other countries rather than the need to evaluate local occupational health provisions.


Keywords: occupational health; research priorities; Malaysia     

Research Priorities for Optimizing Geriatric Pharmacotherapy: An International Consensus

Medication management is becoming increasingly challenging for older people, and there is limited evidence to guide medication prescribing and administration for people with multimorbidity, frailty, or at the end of life. Currently, there is a lack of clear research priorities in the field of geriatric pharmacotherapy. To address this issue, international experts from 5 research groups in geriatric pharmacotherapy and pharmacoepidemiology research were invited to attend the inaugural Optimizing Geriatric Pharmacotherapy through Pharmacoepidemiology Network workshop. A modified nominal group technique was used to explore and consolidate the priorities for conducting research in this field. Eight research priorities were elucidated: quality of medication use; vulnerable patient groups; polypharmacy and multimorbidity; person-centered practice and research; deprescribing; methodological development; variability in medication use; and national and international comparative research. The research priorities are discussed in detail in this article with examples of current gaps and future actions presented. These priorities highlight areas for future research in geriatric pharmacotherapy to improve medication outcomes in older people.     

Setting Priorities in Occupational Health Research in Vietnam

Abstract

To set priorities for occupational health research in Vietnam, the authors developed a questionnaire, using a consensus-conference approach. The questionnaire, which was composed of two parts (five main categories with subgroups), was distributed to 51 specialists in occupational safety and health (OSH) in Vietnam. The responses from 50 persons were analyzed. Among the main categories, the environmental impact of industrial activity was rated the most important, followed by ergonomics and engineering of OSH, incidence/prevalence of work-related diseases and identification of susceptible groups, social impact of industrial activity, and OSH problems of agricultural workers. Among the three problems in the subgroup “environmental impact of industrial activity,” individual health effects was considered the most important. These results were evaluated to arrive at an understanding of the actual situation of aSH problems in Vietnam.     

Research on health-related quality of life: dissemination into practical applications

Stategles and processes for the effective dissemination and diffusion of research findings on healthrelated quallty of life (HQL) into practical applications were explored at a workshop held in Montreal in April, 1994. A conceptual model for dissemination and diffusion of evidence about HQL was used to identify five different target groups: HQL assessors, policy makers, planners of clinical trials, developers of clinical practice guidelines, and those at the level of patient-practitioner clinical decision making. A framework designed to facilitate the translation of fundamental research knowledge into effective action was then used as a starting point for discussions about priorities for research on HQL. The most important problem identified at the workshop was how best to strike an appropriate balance between priorities deemed to be important to those directly involved in HQL research, and priorities deemed to be important to potential users of the results of HQL research?     

Using a research framework to identify knowledge gaps in research on food marketing to children in Australia

Objective: Research in the field of food marketing to children requires a better understanding of the research gaps in order to inform policy development. The purpose of this paper was to propose a framework for classifying food marketing research, using Australian research on food marketing to children to demonstrate how this framework can be used to determine knowledge gaps.
Approach: A literature review of research databases and 'grey' material was conducted to identify research from the previous 10 years. Studies were classified according to their research focus, and media type, as either: exposure, including content analyses; effects of exposure, including opinions, attitudes and actions resulting from food marketing exposure; regulations, including the type and level of regulation that applies to food marketing; or breaches of regulations, including instances where marketing regulations have been violated.
Conclusion: The majority of Australian research on food marketing to children has focused on television advertising and exposure research. Research has consistently shown that the content of food marketing directed at children is predominately for unhealthy foods. There is a lack of research on the effects of food marketing, which would be valuable to inform policy.
Implications: The development of a logical framework for food marketing research allows for the identification of research gaps and enables research priorities to be identified.     

The research potential of practice nurses

Little is known about the research aspirations and experiences of practice nurses. The study discussed in the present paper had three main aims: (1) to assess the level of research interest among practice nurses working in Essex and East London, UK; (2) to identify practice nurses' research priorities; and (3) to explore factors which facilitate and impede the development of practice nursing research. All practice nurses (n = 1,054) in the above areas were sent a questionnaire, and a total of 40% (n = 426) responded after two follow-up letters. Fifty-five respondents who volunteered for further participation were interviewed, either individually or in focus groups. About half (n = 207) of the survey respondents expressed an interest in undertaking research. One-third (n = 145) reported previous participation in research, and 20% (n = 85) had initiated their own research. Logistic regression showed that practice nurses educated to graduate level, and those working in practices with nurse training or participation in external research, were most likely to want to undertake research. Working in a medical training practice was found to be a negative predictor of research interest. Respondents prioritised research into long-term health problems with a high prevalence in the local population; for example, diabetes. Their reasons for wishing to engage in research included improving the service, career development, making work more interesting and reducing isolation. The main barriers identified were lack of time, lack of support from some general practitioners and poor access to higher education resources outside formal courses. The development of practice nurse research would provide a distinctive perspective on health need and service provision. It would contribute to the achievement of the national strategic objective of improving the quality of primary care, enhance the status of the profession, utilise the enthusiasm of individuals, increase job satisfaction and staff retention, and answer real questions.     

Research Priorities for Healthcare Chaplaincy: Views of U.S. Chaplains

Chaplains in the United States and around the world appear to support an evidence-based practice approach to chaplaincy. While there continues to be strong growth in spiritual care research, several spiritual care researchers have stressed the need for a research agenda for chaplaincy. This study investigated the research priorities of chaplains who completed a survey distributed at four chaplaincy conferences in 2016. A total of 193 chaplains responded, resulting in 499 comments. When compared to the findings of existing literature regarding research priorities for chaplaincy, chaplain’s views of research priorities appear to be very consistent with views of chaplaincy leaders. Both prioritize research on outcomes of spiritual care, the development and testing of the effectiveness of interventions, the development and evaluation of assessment and screening tools and research about key subgroups of patients. The chaplains in the survey however added to the agenda research regarding competencies, education, and certification and research regarding the chaplain and the team.     

Priorities of patients,caregivers and health‐care professionals for health research – A systematic review

BackgroundBased on subjective experience, patients can identify research priorities important for health services research. A systematic method for priority setting has been developed by the James Lind Alliance.ObjectiveThis article reviews the literature on the research priorities of patients, caregivers and health‐care professionals and presents the prioritized research themes and prioritization methods used.Search strategyThree electronic databases were searched on 22 May 2018. The search was not limited to any time period or language.Inclusion criteriaThe included studies reported the identification and prioritization of research priorities involving patients, relatives and caregivers. Each included paper addressed a specific ICD‐coded health problem, and at least one‐third of the sample involved in the prioritization process was affected by the health problem.Data extraction and synthesisThe 10 top‐ranked research priorities were included in the thematic analysis. With an inductive approach, a system of identified themes and subthemes was developed from the research priorities. Each research priority was assigned to one research theme.Main resultsThe priority lists of 34 publications involving 331 research priorities were included. Nine main themes represent the content of the research priorities. The most frequently represented main themes are ‘Treatment’, ‘Patients’ and ‘Health condition’. The distribution of the research priorities varied depending on the health conditions and prioritization methods.Discussion and conclusionsThis review provides a comprehensive overview of the overarching research themes in research priorities of affected individuals. The results can guide future patient‐oriented research.     

International Survey of Nursing Home Research Priorities

This article reports the findings of a policy survey designed to establish research priorities to inform future research strategy and advance nursing home practice. The survey was administered in 2 rounds during 2013, and involved a combination of open questions and ranking exercises to move toward consensus on the research priorities. A key finding was the prioritization of research to underpin the care of people with cognitive impairment/dementia and of the management of the behavioral and psychological symptoms of dementia within the nursing home. Other important areas were end-of-life care, nutrition, polypharmacy, and developing new approaches to putting evidence-based practices into routine practice in nursing homes. It explores possible innovative educational approaches, reasons why best practices are difficult to implement, and challenges faced in developing high-quality nursing home research.     

Do different stakeholder groups share mental health research priorities? A four‐arm Delphi study

Background Despite considerable investment in research priority setting within diverse fields of healthcare, little is known about the extent to which different stakeholder groups share research priorities. Conflicting priorities may jeopardize stakeholder engagement in research. Objective To identify the research priorities of different stakeholder groups within mental health care and examine the extent and nature of agreement between them. Design Using a Delphi technique, we conducted parallel consultation processes within four different stakeholder groups. Each group process consisted of three rounds. Setting and participants The study was carried out within a mental health and learning disabilities trust in southern England. Participants were recruited from the following groups: mental health service users (34), informal carers (26), mental health practitioners (35) and service managers (23). Findings There were striking differences between the four groups in respect of their ability and willingness to make priority decisions. These differences notwithstanding, there was considerable overlap in respect of their research interests. All groups identified and attached high importance to issues relating to the promotion of independence, self‐esteem and recovery. The quality of in‐patient care, the place of psychological therapies and the relationship between physical and mental health also emerged across the board. Conclusions The confluence of four different stakeholder groups around a number of clear themes is highly encouraging, providing a framework within which to construct a research agenda and suggesting that mental health research can be built on solid partnerships.     

The early days of primary care groups: general practitioners' perceptions

English primary care is currently undergoing radical reform. Primary care groups (PCGs), effectively compulsory federations of general practices, came into legal existence in April 1999. This paper contains a review of general practitioners' (GPs') initial perceptions of the impact of these reforms on practice and considers the wider issue of changes in professional autonomy. A random sample of 49 GPs from two adjacent health districts in the North of England were interviewed as part of a longitudinal qualitative study. One round of interviews took place 7 to 9 months after the creation of PCGs and a further round of interviews was carried out 6 months later. We were interested in GPs' knowledge of recently formed (PCGs') plans and priorities, the impact of PCG activity to date, and the predicted future impact of such activity. After the published priorities of PCGs had been identified, thematic content analysis was used to ascertain GPs' perceptions of those priorities. GPs were generally unaware of their PCGs' published priorities. The wider strategic role of PCGs in commissioning services was rarely alluded to. Although over a third of GPs reported no current impact of the PCG, the majority expected PCGs to have considerable impact. In particular, control, management and accountability arrangements were all perceived as central issues in the expected developments. Performance management arrangements related to specific clinical priorities were widely expected. Although the new arrangements were inspiring little enthusiasm, the reforms did not appear to threaten GPs sufficiently enough to provoke active resistance.     

Research Priorities for Health Care Chaplaincy in The Netherlands: A Delphi Study Among Dutch Chaplains

The aim of this study was to identify research priorities for health care chaplaincy in The Netherlands according to practicing chaplains and chaplaincy leaders. To this end, a two-round Delphi study was conducted. The first round in which participants were asked to list at least three research priorities was completed by 249 respondents. Through content analysis, the resulting 811 priorities were merged into 54 research topics in 10 domains. In the second round, 179 respondents ranked these topics on a Likert scale from 1 to 5 (low priority–high priority) from the perspective of the patient/client, the organization, and the profession. Based on the mean score of each topic, five research priorities were identified: (a) to investigate the effect of chaplain care according to the patient/client; (b) to determine the patients’/clients’ need(s) for chaplaincy; (c) to investigate the effect of chaplain care on the patient/client; (d) to identify possibilities for chaplaincy practice in outpatient care; and (e) to investigate how to develop a stronger profile for chaplaincy in The Netherlands. These priorities resonate with research on this topic from other countries and indicate directions for future research efforts to improve chaplaincy care.     

Citizens' juries in planning research priorities: process, engagement and outcome

Background  Involving members of the public in setting priorities for health research in becoming increasingly common practice. One method used in public involvement exercises is the citizens' jury.
Objective  This article examines some challenges and benefits of citizens' juries, including issues relating to process, public engagement and outcome.
Design  In Bristol, UK, a citizens' jury was held with the aim of identifying local priorities for research into health and social care. This jury is used as an example through which key issues in public involvement and jury processes are explored.
Setting and Participants  The Bristol Citizens' Jury comprised 20 members of the public (`jurors'), an oversight panel and a steering group. The jurors met at 11 consecutive sessions during 2006 over a period of 16 weeks, which culminated in a written report. All the sessions were audio-recorded, five sessions were observed and video-recorded, and 16 jurors completed written feedback forms at the end of the jury process.
Findings and conclusion  In this article we discuss degree and timing of public involvement in the process of health research; the role of context; representation of communities; processes of deliberation and knowledge production; and how constraints of time and cost may affect public involvement. It was clear that jurors who took part in the Bristol Citizens' Jury were engaged and committed. This engagement may be related to jurors' belief in their ability to shape future research alongside concern about the relevance of the issues under discussion. Opposing emotions of tension and harmony are a crucial part of the deliberation process.