Emerging guidelines for patient engagement in research
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- dc.contributor.author Kirwan, John Richardca
- dc.contributor.author De Wit, Maartenca
- dc.contributor.author Frank, Lori B.ca
- dc.contributor.author Haywood, Kirstie L.ca
- dc.contributor.author Salek, Samca
- dc.contributor.author Brace-McDonnell, Samantha J.ca
- dc.contributor.author Lyddiatt, Anneca
- dc.contributor.author Alonso Caballero, Jordica
- dc.contributor.author Guillemin, Francisca
- dc.contributor.author Bartlett, Susan J.ca
- dc.date.accessioned 2018-03-23T11:53:37Z
- dc.date.available 2018-03-23T11:53:37Z
- dc.date.issued 2017
- dc.description.abstract There is growing recognition that involving patients in the development of new patient-reported outcome measures helps ensure that the outcomes that matter most to people living with health conditions are captured. Here, we describe and discuss different experiences of integrating patients as full patient research partners (PRPs) in outcomes research from multiple perspectives (e.g., researcher, patient, and funder), drawing from three real-world examples. These diverse experiences highlight the strengths, challenges, and impact of partnering with patients to conceptualize, design, and conduct research and disseminate findings. On the basis of our experiences, we suggest basic guidelines for outcomes researchers on establishing research partnerships with patients, including: 1) establishing supportive organizational/institutional policies; 2) cultivating supportive attitudes of researchers and PRPs with recognition that partnerships evolve over time, are grounded in strong communication, and have shared goals; 3) adhering to principles of respect, trust, reciprocity, and co-learning; 4) addressing training needs of all team members to ensure communications and that PRPs are conversant in and familiar with the language and process of research; 5) identifying the resources and advanced planning required for successful patient engagement; and 6) recognizing the value of partnerships across all stages of research. The three experiences presented explore different approaches to partnering; demonstrate how this can fundamentally change the way research work is conceptualized, conducted, and disseminated; and can serve as exemplars for other forms of patient-centered outcomes research. Further work is needed to identify the skills, qualities, and approaches that best support effective patient-researcher partnerships.
- dc.format.mimetype application/pdf
- dc.identifier.citation Kirwan JR, de Wit M, Frank L, Haywood KL, Salek S, Brace-McDonnell S et al. Emerging Guidelines for Patient Engagement in Research. Value Health. 2017 Mar;20(3):481-486. DOI: 10.1016/j.jval.2016.10.003. Epub 2016 Nov 17
- dc.identifier.doi http://dx.doi.org/10.1016/j.jval.2016.10.003
- dc.identifier.issn 1098-3015
- dc.identifier.uri http://hdl.handle.net/10230/34252
- dc.language.iso eng
- dc.publisher Elsevierca
- dc.relation.ispartof Value Health. 2017 Mar;20(3):481-486
- dc.rights © Elsevier This is the published version of an article http://dx.doi.org/10.1016/j.jval.2016.10.003 that appeared in the journal Value Health. It is published in an Open Archive under an Elsevier user license. Details of this licence are available here: https://www.elsevier.com/about/our-business/policies/open-access-licenses/elsevier-user-license
- dc.rights.accessRights info:eu-repo/semantics/openAccess
- dc.subject.keyword Patient engagement
- dc.subject.keyword Patient participation
- dc.subject.keyword Patient-centered outcomes research
- dc.subject.keyword Patient-reported outcomes
- dc.title Emerging guidelines for patient engagement in researchca
- dc.type info:eu-repo/semantics/article
- dc.type.version info:eu-repo/semantics/publishedVersion