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BMC Health Services Research

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Open Access 01-12-2017 | Research article

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

Authors: Melissa C. Brouwers, Marija Vukmirovic, Karen Spithoff, Julie Makarski

Published in: BMC Health Services Research | Issue 1/2017

Abstract

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.

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Title: Understanding optimal approaches to patient and caregiver engagement in the development of cancer practice guidelines: a mixed methods study
Authors: Melissa C. Brouwers
Marija Vukmirovic
Karen Spithoff
Julie Makarski
Publication date: 01-12-2017
Publisher: BioMed Central
Published in: BMC Health Services Research / Issue 1/2017
Electronic ISSN: 1472-6963
DOI: https://doi.org/10.1186/s12913-017-2107-5

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

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

Abstract

Background

Methods

Results

Conclusions

Keynote webinar | Spotlight on sleep in brain health

Springer Medicine

Abstract

Background

Methods

Results

Conclusions

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