Although patient engagement in research is widely touted as an important foundation for improving the relevance and sustainability of research findings, there is little consensus on how to do it in practice. This article describes our research team’s experiences working with and engaging parents throughout the entire research process to reach full partnership in the identification, management, and dissemination of research. Our report of these experiences includes lessons learned along the way regarding how healthcare and research organizations can better support researchers and patients to achieve successful partnerships.
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References
1.
Canadian Institutes of Health Research. Strategy for Patient-Oriented Research—CIHR. 2010. Available at: http://www.cihr-irsc.gc.ca//e/41204.html. Accessed January 22, 2018.
2.
Canadian Institutes of Health Research 2017. Strategy for Patient-Oriented Research—Patient Engagement Framework—CIHR. Available at: http://www.cihr-irsc.gc.ca/e/48413.html. Accessed August 25, 2017.
3.
CarmanKLDardessPMaurerM. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health Aff. 2013;32(2):223–231. doi:10.1377/hlthaff.2012.1133.
4.
ShippeeNDDomecq GarcesJPPrutsky LopezGJ. Patient and service user engagement in research: a systematic review and synthesized framework. Health Expect. 2015;18(5):1151–1166. doi:10.111/hex.12090.
5.
CraigPDieppePMacintyreSMichieSNazarethIPetticrewM. Developing and evaluating complex interventions: the new Medical Research Council guidance. BMJ. 2008;337:a1655. doi:10.1136/bmj.a1655.
Kovacs BurnsKBellowsMEigenseherCGallivanJ. ‘Practical’ resources to support patient and family engagement in healthcare decisions: a scoping review. BMC Health Serv Res. 2014;14:175. doi:10.1186/1472-6963-14-175.
8.
International Association for Public Participation. 2015. IAP2 Canada—Public Participation Spectrum. Available at: http://iap2canada.ca/page-1020549. Accessed January 22, 2018.
9.
OliverSRReesRWClarke-JonesL. A multidimensional conceptual framework for analyzing public involvement in health services research. Health Expect. 2008;11(1):72–84. doi:10.1111/j.1369-7625.2007.00476.x.
DomecqJPPrutskyGElraiyahT. Patient engagement in research: a systematic review. BMC Health Serv Res. 2014;14:89. doi:10.1186/1472-6963-14-89.
16.
BrettJStaniszewskaSMockfordC. Mapping the impact of patient and public involvement on health and social care research: a systematic review. Health Expect. 2014;17(5):637–50. doi:10.1111/j.1369-7625.2012.00795.x.
17.
ShenSDoyle-ThomasKARBeesleyL. How and why should we engage parents as co-researchers in health research? A scoping review of current practices. Health Expect. 2017;20(4):543–554. doi:10.1111/hex.12490.
18.
RaffertyKASullivanSL. “You know the medicine, I know my kid”: how parents advocate for their children living with complex chronic conditions. Health Commun. 2017;32(9):1151–1160. doi:10.1080/10410236.2016.1214221.
19.
PowerNFranckL. Parent participation in the care of hospitalized children: a systematic review. J Adv Nurs. 2008;62(6):622–641. doi:10.1111/j.1365-2648.2008.04643.x.
20.
FordCADavenportAFMeierAMcReeAL. Partnerships between parents and healthcare professionals to improve adolescent health. J Adolesc Health. 2011;49(1):53–57. doi:10.1016/j.adohealth.2010.10.004.
21.
CurryAEPeek-AsaCHamannCJMirmanJH. Effectiveness of parent-focused interventions to increase teen driver safety: a critical review. J Adolesc Health. 2015;57(10):S6–S14. doi:10.1016/j.adohealth.2015.01.003.
22.
JacquezFVaughnLMWagnerE. Youth as partners, participants or passive recipients: a review of children and adolescents in community-based participatory research (CBPR). Am J Community Psychol. 2013;52(1-2):176–189. doi:10.1007/s10464-012-9533-7.
23.
VashiARhodesKV. “Sign right here and you’re good to go”: a content analysis of audiotaped emergency department discharge instructions. Ann Emerg Med. 2011;57(4):315–322. doi:10.1016/j.annemergmed.2010.08.024.
24.
CurranJABishopAPlintA. Understanding discharge communication behaviours in a pediatric emergency care context: a mixed methods observation study protocol. BMC Health Serv Res. 2017;17(2):276. doi:10.1186/s12913-017-2204-5.
25.
Finney RuttenLJMorrisMASchraderLM. Approaching patient engagement in research: what do patients with cardiovascular disease think?Patient Prefer Adherence. 2015;9:1061–1064. doi:10.2147/PPA.S84980.
MinnesPSteinerK. Parent views on enhancing the quality of healthcare for their children with fragile X syndrome, autism or down syndrome. Child Care Health Dev. 2009;35(2):250–256. doi:10.1111/j.1365-2214.2008.00931.x.
28.
EsmailLMooreEReinA. Evaluating patient and stakeholder engagement in research: moving from theory to practice. J Comp Eff Res. 2015;4(2):133–145. doi:10.2217/cer.14.79.
