Family Engagement

Welcome to CanChild’s section on Family and Patient Engagement in Research! 

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What is family and patient engagement?

Definition:

Family and patient engagement means that patients and/or family members work together with health researchers and professionals to improve the quality of health research and services. The Canadian Institute of Health Research (CIHR) recommends that patients be involved throughout the entire research process, from creating a research question and developing methods, to helping translate research findings into clinical practice.

Purpose:

The purpose of family and patient engagement is to:

  • Partner with those who are most affected by health research and have them decide what and how research is conducted;
  • Enhance the relevance and legitimacy of research for patients and families;
  • Have a true positive impact on health services and outcomes; and
  • Provide new insights from patients and families that often result in innovative discoveries.

Why is it Important to engage families and patients in research?

There is growing evidence that supports engaging patients and families throughout the health research process.

Some Benefits for Patients and Families:

  1. Having their voice heard
  2. Influencing research questions
  3. Building trusting relationships with researchers and health professionals
  4. Receiving improved care when research findings are implemented
  5. Learning more about a given disease or disability
  6. Improved patient outcomes
  7. Improving public understanding of science and research
  8. Access to information that general patient population doesn’t get

Some Benefits for Researchers:

By including those who are most affected by and have the greatest understanding and experience of the specific health research topic, there is:

  1. Increased quality of research design
  2. Larger-scale impact of research findings for patients and families
  3. Improved research effectiveness
  4. Stronger relationship with patient communities
  5. Better understanding of patient needs and priorities
  6. Potential for increasing participant recruitment by having patients & families help with recruitment efforts.

For more information about different approaches and frameworks of family and patient engagement in research, check out our family and patient engagement resources section!

  • Click here for list of references

    Black, A., Strain, K., Wallsworth, C., Charlton, S., Chang, W., McNamee, K., & Hamilton, C. (2018). What constitutes meaningful engagement for patients and families as partners on research teams? Journal of Health Services Research, 23(3), 158-167.



    Canadian Institute of Health Research. (2011). Canada’s strategy for patient-oriented research. Retrieved on April 23rd, 2019 from www.cihr-irsc.gc.ca/e/documents/P-O_Research_Strategy-eng.pdf https://doi.org/10.1186/1472-6963-14-89



    Canadian Institute of Health Research. (2014). Strategy for patient oriented research: patient engagement framework. Retrieved on April 6th, 2019 from http://www.cihr-irsc.gc.ca/e/48413.html#a5



    Concannon, T., Fuster, M., Saunders, T., Patel, K., Wong, J., Leslie, L., & Lau, J. (2014). A systematic review of stakeholder engagement in comparative effectiveness and patient-centred outcomes research. Journal of General Internal Medicine, 29(12), 1692-1701.



    Domecq, J. P., Prutsky, G., Elraiyah, T., Wang, Z., Nabhan, M., Brito J. P., … Murah, M. H. (2014). Patient engagement in research: a systematic review. BMC Health Services Research, 14(89). https://doi.org/10.1186/1472-6963-14-89



    Duffet, L. (2017). Patient engagement: what partnering with patients in research is all about. Thrombosis Research, 150, 113-120.



    Esmail, L., Moore, E., & Rein, A. (2015). Evaluating patient and stakeholder engagement in research: moving from theory to practice. Journal of Comparative Effectiveness Research, 4 (2), 133-145.



    Harrison, S. L., & Brooks, D. (2015). Active patient engagement: long overdue in rehabilitation research. Physiotherapy Canada, 67(4), 305-307.



    Johannesen, J. (2017). Exploring the purpose and meaning of patient engagement in pediatric neurodisability research. Retrieved on April 23rd, 2019 from https://johannesen.ca/2017/11/exploring-purpose-meaning-patient-engagement-pediatric-neurodisability-research/



    Morris, C., Shilling, V., & McHugh, C. (2011). Why is it crucial to involve families in all stages of childhood disability research. Developmental Medicine & Child Neurology. doi: 10.1111/j.1469-8749.2011.03984.x



    Vat, L. E., Ryan, D., & Etchegary, H. (2017). Recruiting patients as partners in health research: a qualitative descriptive study. Research Involvement and Engagement, 3(15). Doi: 10.1186/s40900-017-0067-x.

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CanChild Family Engagement Day 2016
"Opening doors to Family-research partnerships today for a brighter tomorrow!"
April 2, 2016 | Ron Joyce Children's Health Centre

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CanChild Family Engagement Day 2014
"CanChild: What we "CAN" do together"
November 22, 2014 | McMaster University