Understanding optimal approaches to patient and caregiver engagement in the development of cancer practice guidelines: a mixed methods study

BACKGROUND: Practice guidelines (PGs) can assist health care practitioners and patients to make decisions about health care options. A key component of high quality PGs is the consideration of patient values and preferences. A mixed methods study was conducted to understand optimal approaches to patient engagement in the development of cancer PGs. METHODS: Cancer patients, survivors, family members and caregivers were recruited from cancer clinics, follow-up clinics, community support programs, a provincial patient and family advisory committee, and a provincial cancer PG development program. Participants attended a workshop, completed a survey, or participated in a telephone interview, to provide information about PG awareness, attitudes, information needs, training, engagement approaches and barriers and facilitators. RESULTS: Forty-one participants (12 workshop attendees, 21 survey respondents and 8 interviewees) provided data. For those with no PG development experience, fewer than half were previously aware of PGs but perceived several benefits to the inclusion of this perspective. Common barriers to participation across the groups were time commitment, duration of the PG development process, and financial costs. Positive beliefs about the contributions that could be made and practical considerations (e.g., orientation and training, defined roles and expectations) were identified as key features in the successful integration of patients into the PG development process. There was no single model of engagement favored over another. CONCLUSIONS: Study results align with similar studies in other contexts and with international patient engagement efforts. Findings are being used to test new patient engagement models in a programmatic PG development initiative in Ontario, Canada. ELECTRONIC SUPPLEMENTARY MATERIAL: The online version of this article (doi:10.1186/s12913-017-2107-5) contains supplementary material, which is available to authorized users.