Background 
There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.
 
Objective
 
To identify the impact of patient and public involvement on health and social care research.
 
Design
 
A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon-Woods et al. (2005) checklist.
 
Inclusion criteria
 
All study types that reported the impact PPI had on the health and/or social care research study.
 
Main results
 
A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user-focused research objectives, development of user-relevant research questions, development of user-friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer-focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.
 
Conclusion
 
This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.

https://onlinelibrary.wiley.com/doi/pdf/10.1111/j.1369-7625.2012.00795.x

Mapping the impact of patient and public involvement on health and social care research: a systematic review

The increasing use of participatory research (PR) approaches to address pressing public health issues reflects PR's potential for bridging gaps between research and practice, addressing social and environmental justice and enabling people to gain control over determinants of their health. Our critical review of the PR literature culminates in the development of an integrative practice framework that features five essential domains and provides a structured process for developing and maintaining PR partnerships, designing and implementing PR efforts, and evaluating the intermediate and long-term outcomes of descriptive, etiological, and intervention PR studies. We review the empirical and nonempirical literature in the context of this practice framework to distill the key challenges and added value of PR. Advances to the practice of PR over the next decade will require establishing the effectiveness of PR in achieving health outcomes and linking PR practices, processes, and core elements to health outcomes.

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The Value and Challenges of Participatory Research: Strengthening Its Practice*‡

ion of relevant information from eligible articles and the creation of summary evidence tables presenting the key details and findings for the articles. The EPC paired trained abstractors with a senior reviewer, who used an analyticors with a senior reviewer, who used an analytic framework to guide development of abstraction tables. The EPC researchers used the same framework to rate the quality of both the primary research and primary community-based participation elements. They rated the quality of only those studies (often represented by a set of published articles) representative of a completed intervention study evaluation, or an observational study designed to permit extrapolation beyond the study population.

Community-based participatory research: assessing the evidence

Depression and cancer: mechanisms and disease progression.

In January of 2002, a call for papers featuring community-based participatory research (CBPR) was issued. The intent was to highlight the outstanding work being done in this area and the role CBPR can play in improving the care and outcomes of populations at-risk.1 What emerged from this call was more than what any of the editors expected, and has been illustrative of both the superb scholarship and community engagement occurring in CBPR and how much more can be done in refining and broadening the application of CBPR in what we do. The body of research submitted for consideration also highlights several important realities: 1) CBPR is appropriate and applicable across disciplines and within many diverse community settings; 2) the potential for CBPR to make meaningful contributions to improving the health and well-being of traditionally disenfranchised population groups and communities is very real and, in many instances, being realized; and 3) we need to do a better job of articulating CBPR to our peers and colleagues as “research-plus” that is both methodologically rigorous and that makes unique contributions not possible using other means.

The 11 original research papers presented in this Special Issue came from an impressive pool of 81 submissions. And while CBPR may seem somewhat straightforward in theory, as these articles demonstrate, the degree to which CBPR is applied and how it is represented are far more diverse and varied. The peer review process and several editor meetings for this Special Issue brought out many of the challenges inherent in CBPR. How do we define community? What is a meaningful impact? How do we distinguish between community-placed and community-based research? How do we balance the importance of the research process with the importance of the research product or findings? Is there a methodologic threshold with which to determine whether a project is or is not CBPR? What is evident from the submissions is how broadly CBPR is being applied, geographically, within specific population groups and clinical scenarios, and methodologically.

For example, Angell et al.2 and Stratford et al.3 both describe CBPR projects in rural settings, while van Olphen et al.,4 Horowitz et al.,5 and Masi et al.6 all describe urban-based research. Initiatives targeting specific vulnerable or at-risk populations are featured in work by Lauderdale et al.7 with older Chinese immigrants, by Lam et al.8 with Vietnamese-American women, and by van Olphen et al. with African-American women. Similarly, CBPR was clearly applicable in several different clinical scenarios, including chronic disease management of diabetes,5 asthma,9 and cancer treatment and prevention.10 The partners engaged in the community-based research also varied across projects and included faith-based organizations,4,10 neighborhood and community leaders,6,8 and social service and support agencies.2,3,7 Finally, the research topics and interventions themselves also reflected a wide spectrum of CBPR applications. Sloane et al. examined the degree of nutritional resources available within a community, whereas Masi et al. evaluated the application of internet-based technologies.5,11

The articles presented also reflect the broad scope of research in which CBPR can be applied methodologically. Angell et al. and Corbie-Smith et al. report on findings where CBPR was applied to randomized controlled trials,2,10 while van Olphen et al., Masi et al., and Lam et al., all report data from intervention studies with pre–post comparisons.4,6,8 Horowitz et al. and Lauderdale et al. represent good examples of CBPR applied to survey research,5,7 and Parker et al. demonstrate CBPR applied to a qualitative study.9 Finally, the article by Nyden provides an overview of CBPR and highlights many of the issues and struggles to institutionalizing and legitimizing CBPR within the broader research community from an academic perspective.12

As the science and field of CBPR advance to the next level, it is clear that several things need to occur. We need more formal training in CBPR that is more broadly available to both academically-based researchers and community members. Post-doctoral training programs such as the Kellogg Community Scholars Program13 need to be expanded beyond the current 3 schools of public health, and need to be integrated into other health professional schools and within other established fellowship and post-doctoral training programs. Additionally, career development awards sponsored by federal agencies and private philanthropies need to be amenable to proposals that engage the candidate in CBPR projects and ideally should promote this in their solicitation and review process. We also need to encourage scholarship, not only in the application of CBPR, but also in better understanding the nuances of the model, so that it can truly live up to its potential. This includes developing a common language for describing CBPR-related research in the health services literature, so that it can stand on its own merits and be appreciated for the contributions it brings to the field. One possible framework for this common language is introduced in Table 1 and is meant to serve as a resource for authors considering submission of CBPR projects to peer-reviewed journals. Finally, we need to gain a greater appreciation for CBPR as “research-plus” that is reflected in funding priorities, review criteria, community empowerment, and academic advancement.



Table 1

Proposed Process for Describing Community-based Participatory Research Findings in Health Sciences Literature



In summary, it is best to view this Special Issue as a reflection of both where we are as a research community and where we need to go. The 11 papers ultimately chosen for this issue represent a small fraction of the excellent work ongoing in many of our communities. Yet there is much more than can and should be done. As the gap in health access and health outcomes grows wider and is further defined by socioeconomics, race, language, country of origin, and other markers and designations inherent in a multicultural, multiethnic society, we need CBPR to help find the answers and sustainable solutions.

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Community-based participatory research: opportunities, challenges, and the need for a common language.

The aim of this study was to determine whether psychological adjustment to advanced breast cancer was positively associated with expressing emotion and adopting a fighting spirit and negatively associated with denial and fatalism. Total mood disturbance on the Profile of Mood States was used as the measure of psychological adjustment. The Courtauld Emotional Control Scale measured emotional expression, and the Mental Adjustment to Cancer measured fighting spirit, denial, and fatalism. The sample included 101 women with a diagnosis of metastatic or recurrent breast cancer. Fighting spirit and emotional expressiveness were found to be associated with better adjustment. No association was found between mood disturbance and denial or fatalism. Because this was a cross-sectional study, no conclusions regarding a causal relationship between adjustment and emotional expressiveness or adjustment and fighting spirit were possible.

Coping styles associated with psychological adjustment to advanced breast cancer

The purpose of this study was to examine relationships between emotional adjustment to advanced breast cancer, pain, social support, and life stress. The cross-sectional sample was compromised of 102 women with metastatic and/or recurrent breast cancer who were recruited into a randomized psychosocial intervention study. All women completed baseline questionnaires assessing demographic and medical variables, social support, life stress, pain, and mood disturbance. Three types of social support were assessed: (1) number of persons in support system; (2) positive support; and (3) aversive support. On the Profile of Mood States (POMS) total score, we found significant interactions between life stress and social support; having more people in the patient's support system was associated with less mood disturbance, but only among patients who had undergone greater life stress. Also, aversive social contact was significantly related to total mood disturbance (POMS), and having more aversive social contact was particularly associated with total mood disturbance (POMS) among patients who had undergone greater life stress. Pain intensity was associated with greater total life stress, and was not significantly related to social support. These results are consistent with the 'buffering hypothesis' that social support may shield women with metastatic breast cancer from the effects of previous life stress on their emotional adjustment; however, aversive support may be an additional source of life stress associated with emotional distress. Also, pain is greater among women with greater life stress, regardless of social support.

Social support, life stress, pain and emotional adjustment to advanced breast cancer

This study examined distress, coping, and group support among a sample of rural women who had been recently diagnosed with breast cancer. We recruited 100 women who had been diagnosed with primary breast cancer at one of two time points in their medical treatment: either within a window up to 3 months after their diagnosis of breast cancer, or within 6 months after completing medical treatment for breast cancer. Their mean age was 58.6 years (SD = 11.6), and 90% were of white/European American ethnicity. Women completed a battery of demographic and psychosocial measures prior to being randomized into a psychoeducational intervention study, and then again 3 months later at a follow-up assessment. The focus of this article is on the women's self-reported psychosocial status at baseline. Many of the women experienced considerable traumatic stress regarding their breast cancer. However, this distress was not reflected in a standard measure of mood disturbance that is frequently used in intervention research (the Profile of Mood States). The average woman considered her diagnosis of breast cancer to be among the four most stressful life events that she had ever experienced. Also, women on average reported a high level of helplessness/hopelessness in coping with their cancer. On average, women felt that they "often" (but not "very often") received instrumental assistance, emotional support, and informational support. Women varied considerably in which kind of social group provided them with the most support, with as many reporting that they found the greatest support in spiritual/church groups or within their family units as with breast or general cancer groups. These results suggest that among these rural women with breast cancer, distress with the diagnosis of breast cancer must be carefully assessed, as women who are highly distressed about their breast cancer may not report general mood disturbance. Furthermore, the kinds of groups that rural women with breast cancer experience as most supportive need to be identified so that psychosocial interventions can be matched to breast cancer patients' individual needs.

Distress, coping, and social support among rural women recently diagnosed with primary breast cancer.

OBJECTIVE: This study was initiated by breast cancer survivors living in a rural community in California. They formed a partnership with academic researchers to develop and evaluate a low-cost, community-based Workbook-Journal (WBJ) for improving psychosocial functioning in geographically and economically isolated women with primary breast cancer. DESIGN: A randomized controlled trial was used to compare the WBJ intervention plus educational materials to educational materials alone (usual care). SETTING: One rural cancer center and several private medical, surgical, and radiation oncology practices in 7 rural counties in the Sierra Nevada Foothills of California. PARTICIPANTS: One hundred women with primary breast cancer who were either within 3 months of diagnosis or within 3 months of completing treatment. INTERVENTION: A community-initiated, theoretically-based Workbook-Journal, designed by rural breast cancer survivors and providers as a support group alternative. It included compelling personal stories, local rural resources, coping strategies, and messages of hope. RESULTS: Community recruiters enrolled 83% of the women referred to the study. Retention at 3-month follow-up was 98%. There were no main effects for the WBJ. However, 3 significant interactions suggested that women who were treated in rural practices reported decreased fighting spirit and increased emotional venting and posttraumatic stress disorder symptoms if they did not receive the WBJ. Among women who received the WBJ, 74% felt emotionally supported. CONCLUSIONS: This community-based Workbook-Journal may be an effective psychosocial intervention for rural, isolated, and low-income women with breast cancer. Community involvement was essential to the success of this project.

Psychosocial Intervention for Rural Women with Breast Cancer: The Sierra Stanford Partnership

s. Spiegel, D., & Bloom, J. R. (1983). Group therapy and hypnosis reduce metastatic breast carcinoma pain. Psychosomatic Medi-

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Karyn Angell

Papers

Coping styles associated with psychological adjustment to advanced breast cancer

Social support, life stress, pain and emotional adjustment to advanced breast cancer

Distress, coping, and social support among rural women recently diagnosed with primary breast cancer.

Psychosocial Intervention for Rural Women with Breast Cancer: The Sierra Stanford Partnership

Symposium: support groups for women with breast cancer: traditional and alternative expressive approaches