Plain English summaryIncreasingly, funders and researchers want to partner with patients in health research, but it can be challenging for researchers to find patient partners. More than taking part in research as participants, patient partners help design, carry out and manage research projects. The goal of this study was to describe ways that patient partners have been recruited by researchers and patient engagement leads (individuals within organizations responsible for promoting and supporting patients as research partners).We talked with researchers and patient engagement leads in Canada and the United Kingdom, as well as a patient representative. We found three ways that could help researchers and patients find each other. One way is a case-by-case basis, where patients are often sought with experience of a health condition that is the focus of the research. The other ways involved directories where projects were posted and could be found by patients and researchers, or a third party matched patients with research projects. We found four recruitment strategies:Social marketingCommunity outreachHealth systemPartnering with other organizations (e.g., advocacy groups) There are many influences on finding, selecting and retaining patient partners: patient characteristics, the local setting, the opportunity, work climate, education and support. We hope study results will provide a useful starting point for research teams in recruiting their patient partners.Abstract Background Patient engagement in clinical trials and other health research continues to gain momentum. While the benefits of patient engagement in research are emerging, relatively little is known about recruiting patients as research partners. The purpose of this study was to describe recruitment strategies and models of recruiting patients as partners in health research. Methods Qualitative descriptive study. Thirteen patient engagement leads and health researchers from Canada and the United Kingdom, as well as one patient representative from a national patient organization (7 female) completed semi-structured interviews. Results Recruitment infrastructures available to respondents varied, but could be categorized into three models including the traditional, third-party and directory models. Four categories of recruitment strategies were identified, representing multiple ways of recruiting patient partners: social marketing recruitment, community outreach recruitment, health system recruitment, and partnering recruitment. Conclusions Multiple recruitment strategies were identified for engaging patient partners in research, and some common factors influenced recruitment. Study findings contribute to the evidence base in patient engagement and provide guidance for research teams to help identify potential recruitment methods for their patient partners.
Many childhood cancer survivors (CCS) could benefit from improved knowledge about their cancer diagnosis, the treatments received, and associated risks during the period when they transition into adult aftercare. Interventions that support the transition from pediatric to adult care have showed high patient satisfaction. We developed an educational workbook, "Life After the Janeway," to support CCS transition into adult care. We evaluated its understandability, actionability, and overall acceptability, using an online survey based on the Agency for Healthcare Research and Quality's Patient Education Materials Assessment Tool for Printable Material (PEMAT-P). Ten participants completed the survey. The overall PEMAT-P score was 94.06 (SD ± 7.40). Mean scores for understandability and actionability were 92.83 (SD ± 8.79) and 98.15 (SD ± 5.24) respectively. Interrater reliability found strong agreement across survey items. Participants support efforts to improve transition and felt positive about the intervention. The workbook was shown to be understandable and actionable to likely users. The next steps will focus on delivering the workbook to CCS going through their transition of care and exploring developing the workbook in an electronic format.
BackgroundThis study set out to identify patterns in the causes of waits and wait-related satisfaction.MethodsWe conducted qualitative interviews with urban, semi-urban, and rural patients (n = 60) to explore their perceptions of the waits they experienced in the detection and treatment of their breast, prostate, lung, or colorectal cancer. We asked participants to describe their experiences from the onset of symptoms to the start of treatment at the cancer clinic and their satisfaction with waits at various intervals. Interview transcripts were coded using a thematic approach.ResultsPatients identified five groups of wait-time causes:Patient-related (beliefs, preferences, and non-cancer health issues)Treatment-related (natural consequences of treatment)System-related (the organization or functioning of groups, workforce, institution, or infrastructure in the health care system)Physician-related (a single physician responsible for a specific element in the patient’s care)Other causes (disruptions to normal operations of a city or community as a whole) With the limited exception of physician-related absences, the nature of the cause was not linked to overall satisfaction or dissatisfaction with waits.ConclusionsCauses in themselves do not explain wait-related satisfaction. Further work is needed to explore the underlying reasons for wait-related satisfaction or dissatisfaction. Although our findings shed light on patient experiences with the health system and identify where interventions could help to inform the expectations of patients and the public with respect to wait time, more research is needed to understand wait-related satisfaction among cancer patients.
Access to bariatric surgery to treat obesity is limited and has long wait times. Many adults are seeking nonsurgical weight loss support. Our study objective was to conduct a systematic review of nonsurgical weight loss interventions. PubMed, EMBASE, CINAHL, PsycInfo, and the CochraneLibrary were searched. Inclusion criteria were adults 18 + with a BMI > 25 enrolled in minimum a 3-month nonsurgical weight loss intervention. Studies were independently extracted and assessed for quality using A MeaSurement Tool to Assess systematic Reviews 2 (AMSTAR2). Pooled analyses were extracted, graded for evidence quality, and summarized. A total of 1065 studies were assessed for eligibility; 815 screened and 236 full-texts assessed. Sixty-four meta-analyses met eligibility criteria: 1180 RCTs with 184,605 study participants. Studies were categorized as diets (n = 13), combination therapies (n = 10), alternative (n = 16), technology (n = 10), behavioral (n = 5), physical activity (n = 6),and pharmacotherapy (n = 3). In 80% of studies, significant weight losses were reported ranging from 0.34-8.73 k in favor of the intervention. The most effective nonsurgical weight loss interventions were diets, either low-carbohydrate or low-fat diets, followed for 6 months; combination therapy including meal replacements plus enhanced support; and pharmacotherapy followed for 12 months. Although significant weight losses were reported for other types of interventions such as physical activity and technology, the majority of studies reported weight losses less than 2 kgs.
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