From inclusion to independence – Training consumers to review research

Health and medical research invariably impacts on the lives of everyday people. Organisations in the developed world are increasingly involving the public in health research projects, and research governance structures and processes. The form the involvement takes varies, as does the level of involvement, from individuals, to groups, to the wider community. Lay community members can be trained to independently review health and medical research, and wider societal involvement in funding decisions, can be effectively fostered. The theoretical foundation, design and development of a task based consumer-training program, including a number of enabling factors to support the success of such training are presented. This work is likely to be of value to those planning to train consumers in technical or complex areas

Training of patient and consumer representatives in the basic competencies of evidence-based medicine: a feasibility study

<p>Abstract</p> <p>Background</p> <p>Evidence-based medicine (EBM) has become standard approach in medicine. Patients and health authorities increasingly claim active patient roles in decision making. Education to cope with these roles might be useful. We investigated the feasibility, acceptability and possible impact of EBM training courses for patient and consumer representatives.</p> <p>Methods</p> <p>We designed a generic one-week EBM course based on previous experience with EBM courses for non-medical health professionals. A course specific competence test has been developed and validated to measure EBM skills. Formative and summative evaluation of the course comprised: 1) EBM skills; 2) individual learning goals; 3) self-reported implementation after six months using semi-structured interviews; 4) group-based feedback by content analysis. EBM skills' achievement was compared to results gathered by a group of undergraduate University students of Health Sciences and Education who had attended a comparable EBM seminar.</p> <p>Results</p> <p>Fourteen EBM courses were conducted including 161 participants without previous EBM training (n = 54 self-help group representatives, n = 64 professional counsellors, n = 36 patient advocates, n = 7 others); 71% had a higher education degree; all but five finished the course. Most participants stated personal learning goals explicitly related to practicing EBM such as acquisition of critical appraisal skills (n = 130) or research competencies (n = 67). They rated the respective relevance of the course on average with 80% (SD 4) on a visual analogue scale ranging from 0 to 100%.</p> <p>Participants passed the competence test with a mean score of 14.7 (SD 3.0, n = 123) out of 19.5 points. The comparison group of students achieved a mean score of 14.4 (SD 3.3, n = 43). Group-based feedback revealed increases of self confidence, empowerment through EBM methodology and statistical literacy, and acquisition of new concepts of patient information and counselling. Implementation of EBM skills was reported by 84 of the 129 (65%) participants available for follow-up interviews. Barriers included lack of further support, limited possibilities to exchange experiences, and feeling discouraged by negative reactions of health professionals.</p> <p>Conclusions</p> <p>Training in basic EBM competencies for selected patient and consumer representatives is feasible and accepted and may affect counselling and advocacy activities. Implementation of EBM skills needs support beyond the training course.</p

Supporting cancer survivors’ participation in peer review: perspectives from NCI’s CARRA program

PURPOSE: Including cancer survivors in the peer review of cancer-related research is increasingly valued as a strategy for bringing the “patient perspective” to discussions of research merit and human subjects protection. Because integrating lay stakeholders into peer review poses challenges, this qualitative study explored the perspectives of experienced patient advocates to identify programmatic supports for survivors’ participation. METHODS: Semi-structured telephone interviews were conducted with a purposive sample of 19 cancer survivors and 6 administrators involved in NCI’s Consumer Advocates in Research and Related Activities program. Audio-recorded interviews were transcribed verbatim, and analyzed via thematic content analysis. Participants were highly educated and included survivors of breast, prostate, and blood-related cancers. RESULTS: Interviewees emphasized the importance of adequately preparing survivors to serve as advocates. Given the intellectual challenge of peer review, interviewees noted the need for intensive and ongoing training on how to review proposals, and they identified mock reviews and peer mentoring as effective strategies to complement didactic instruction. Participants also stressed the need to address social challenges inherent in advocate-scientist encounters. In addition to training for both advocates and scientists, participants reported that opportunities for informal social interaction were important for facilitating collaboration. Finally, participants recommended structuring advocates’ role so as to give them a voice via equal voting privileges and protected opportunities to speak. CONCLUSIONS: Programs that seek to include cancer survivors in peer review can prepare advocates’ for the intellectual and social challenges of working with scientists through careful attention to training, networking, and programmatic design. IMPLICATIONS FOR CANCER SURVIVORS: Cancer survivors have been leaders in developing a role for patient advocates in the peer review of research. As the concept of patient-centered outcomes continues to gain currency, lessons learned from early programs for patient inclusion in peer review can help to inform future efforts aimed at giving patients a voice in shaping agendas for health-related research