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What is Patient-Oriented Research?
The Canadian Institutes of Health Research (CIHR) defines patient-oriented research as a continuum of research that engages patients as partners, focuses on patient-identified priorities, and improves patient outcomes. This research, conducted by multidisciplinary teams in partnership with relevant stakeholders, aims to apply the knowledge generated to improve healthcare systems and practices (1).
Simply put, any research that:
  • engages patients as partners
  • focuses on patient-identified priorities
  • improves patient outcomes

When using the term ‘patients’ we include:
  • in-patients
  • out-patients
  • caretakers
  • families
  • any member of the public with a stake in improved outcomes
 
What is Patient Engagement?
Patient engagement is an emerging movement in Canadian healthcare and health research. It is about the meaningful involvement of individual citizens in policy or program development, from agenda-setting and planning to decision-making, implementation and review (2). Patient engagement in research is research being carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’, or ‘for’ them (3).
There are multiple ways and levels of engaging patients, and the degree of patient engagement can vary. Some researchers only provide information or include patients as participants to collect information while others fully engage patients as partners. CIHR encourages researchers to actively engage patients (level 3-5).

Source: Canadian Institutes of Health Research (2014)

Why is Patient Engagement Important?
Patients and the public offer unique invaluable insights. Early engagement with the patients leads to formulating relevant research topics, questions, and methodologies. In other words, it ensures that health research is relevant to the needs of Newfoundlanders and Labradorians.
“Patients bring the perspective as ‘experts’ from their unique experience and knowledge gained through living with a condition or illness, as well as their experiences with treatments and the healthcare system. Involvement of patients in research increases its quality and, as healthcare providers utilize research evidence in their practice, increases the quality of care.  By encouraging a diversity of patients to tell their stories, new themes may emerge to guide research. Patients gain many benefits through their involvement including increased confidence and master new skills, access to information they can understand and use, and a feeling of accomplishment from contributing to research relevant to their needs (Canadian Institutes of Health Research).”

When Do You Involve Patients?
You can involve patients in different stages of the research cycle. Patients can help to identify research priorities, review research proposals, select methodologies, carry out interviews, give feedback on results, and share research findings. It is most effective to involve patients as early as possible; however, it is never too late. Important considerations include:
  • Why you want to involve patients?
  • Who you want to involve?
  • How these people can be involved in different stages?
 

Source: INVOLVE (2012)

How Do You Involve Patients in Research?
There are several ways to involve patients. Engagement methods can be selected based on the research phase: deciding what to research, deciding how to do it, carrying out the research, letting people know the results, and so on. There are some great examples of successful patient engagement initiatives in Canada, the US, Australia, and the UK. Examples of patient involvement are (3):
  • Identifying Priorities: invite people to an event, attend meetings from patients groups, hold a focus group/survey/interview, ask patient (organisations) for feedback;
  • Commissioning: involve patients in reviewing research proposals, having members of patients on a board or panel;
  • Designing and Managing: suggest ways how patients can be involved in various stages of the research, ask patients to share ideas for the recruitment process, ask patients to help you with written information with a user friendly and clear language;
  • Undertaking: patients can help with carrying out interviews, running focus groups, interpret results, review literature;
  • Disseminating: co-develop newsletters, involve patients in sharing results on conferences, ask patients to share results, invite to be a co-author;
  • Implementing: ask patients to select the best ideas, develop new services, interventions, protocols together with patients, test innovations;
  • Evaluation: help to build evidence about the impact of patient engagement, let others know about what worked well and what did not.
 
How Can NL Support Help You?
  • Assist you with developing a patient engagement strategy and/or patient-oriented research proposal
  • Support research teams with patient engagement activities
  • Provide tools and resources for patient engagement
  • Provide training and career development opportunities
 
 
 
Where Can You Find More Information?
General
CIHR Citizen Engagement in Health Casebook
CIHR Citizen Engagement Handbook
CIHR Framework for Citizen Engagement
Health Canada Policy Toolkit for Public Involvement in Decision Making
James Lind Alliance Guidebook
This guidebook provides step-by-step guidance to establishing Priority Setting Partnerships. These bring patients, their carers, and clinicians together to identify and prioritize treatment uncertainties for research, using James Lind Alliance (JLA) methods.
 
Groups & Organizations
International Association for Public Participation
IAP2 is an international association of members who seek to promote and improve the practice of public participation in relation to individuals, governments, institutions, and other entities that affect the public interest in nations throughout the world.
Resources Include: 
Core Values for the Practice of Public Participation
IAP2 Spectrum of Participation
 
INVOLVE (UK)
Funded by the National Institute for Health Research (NIHR) to support public involvement in NHS, public health and social care research.
Resources Include: 
Briefing notes for researchers
Evidence Library
Publications
Cost Calculator
Research Project Database
 
Patient-Centered Outcomes Research Institute (PCORI)
A nonprofit, nongovernmental organization with the goal to improve the quality and relevance of evidence available to help patients, caregivers, clinicians, employers, insurers, and policy makers make informed health decisions. Specifically, we fund comparative clinical effectiveness research, or CER, as well as support work that will improve the methods used to conduct such studies.
 
References
(1)    Canadian Institutes of Health Research. Strategy for Patient-Oriented Research - Patient Engagement Framework. [webpage 2014] Available from: http://www.cihr-irsc.gc.ca/e/48413.html.
(2)    Canadian Institutes of Health Research. CIHR’s Framework for Citizen Engagement. [webpage  2010] Available from: http://www.cihr-irsc.gc.ca/e/41270.html 
(3)    INVOLVE. Briefing notes for researchers: public involvement in NHS, public health and social care research. February 2012. Available from: http://www.invo.org.uk/resource-centre/resource-for-researchers/