Patient Engagement

 

 

What is Patient Engagement?

 

Patient Engagement is an emerging movement in Canadian healthcare and health research. It is the act of meaningful and active collaboration in governance, priority setting, conducting research and knowledge translation. Depending on the context, patient-oriented research may also engage people who bring the collective voice of specific, affected communities. This is a fundamental shift in the way decisions are made. This engagement means sustained and active involvement over the course of a research project through processes that promote mutual learning, shared decision-making and (possibly) ongoing partnership and collaboration.

Research centres and healthcare organizations are partnering and engaging in ongoing dialogue and relationship-building with community groups and patients in order to promote shared-decision making. This not only reflects the needs and wants of patients and the public, but ultimately leads to outcomes that are a better reflection of patient priorities.

The goals of MSSU Patient Engagement include:

  • Involving more patients, families and citizens in patient-oriented research through patient research partnerships and engagement initiatives;
  • Ensuring that patients, families and citizens are able to influence decisions and priorities in a meaningful and satisfactory way; and
  • Building an internal culture of engagement within the Maritime research community so that engagement is embedded in how we conduct health research, make decisions, and set priorities.

 

Visual Value Model for Patient Engagement

Researchers, health care professionals and policy-makers work together with patients to ensure a patient-oriented approach that improves both practice and treatment. Patients provide input on identifying health research priorities and participate in the design and undertaking of research projects. As a result, research is conducted in areas patients’ value; researchers understand the value of patient involvement and patients understand the value of research. Ultimately, patients influence and accelerate decision making, translation and uptake of new practices, leading to improvements in patient experience with the health system and health outcomes.

Source: Strategy for Patient Oriented Research – Patient Engagement. Canadian Institutes of Health Research. 

 

 

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Why is Patient Engagement important?

 

 

As it relates to patient-oriented research, Patient Engagement is a fundamental component of the research process. Early engagement with the patients leads to formulating relevant research topics, questions, and methodologies. This type of shared decision making is the optimal level of engagement initiatives. However, it can, on occasion, occur later in the process by engaging the patient community during the research itself. In short, Patient Engagement is meant to ensure that health research reflects the needs and values of Maritime patients.

“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 health care system. Involvement of patients in research increases its quality and, as health care 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.” (1)

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When do you do Patient Engagement?

 

 

Patient Engagement is appropriate so long as it is planned and executed correctly, given the necessary time, and follows its core values. In order to engage the patient community appropriately, incorporating a Patient Engagement strategy is necessary to capture the opinions and beliefs of patients during the initiation stage of the research process. Patients can help shape research questions, select appropriate methodologies and knowledge translation strategies, and inform analyses. The most effective and encompassing engagement occurs when patients are contributors to research projects from the first stage to the last.

Whether patients have made contributions to the development of the research question and direction of research or not, it is critical that an open and honest line of communication is established. This sets out the expectations of the research team and defines a clear role for the patient community. Poor engagement planning and commitment can damage relationships, lead to outcomes that do not reflect patient preferences, and result in patient engagement practice that is considered "tokenism".

 

  Proper Patient Engagement Improper Patient Engagement
What is your rationale? Intent is to allow patients to contribute to the research topic, methods, data, or analysis. “Checking the box”
What decision needs to be made? A clear definition of the scope is provided. This includes how patient perspective will be incorporated into the decision-making process. Unclear as to how patient perspectives will be used to inform the research project.
Who does it involve? Identified Patients, citizens, care-givers, families. Limited to stakeholder groups, health care representatives, agenda driven individuals.
How will the engagement be carried out? Engagement methods are selected based on the identified level of engagement (See IAP2 Spectrum in the PE Toolkit).
Clear understanding on what information will help patients participate in the process and how will that be communicated.
Inappropriate methods for the level of engagement.
Lack of communication and information provided to patients to support their contributions.
Tight timelines

 

 

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How do you do Patient Engagement?

 

 

See the resource section of this page for some great examples of successful Patient Engagement initiatives in Canada, the US, and the UK. Patient Engagement can take many forms and occur at a number of different stages of the research process. It is most effective when an engagement strategy is incorporated into the research project from start to finish and patients act as partners to the research team over the course of the research project.

Examples of Patient Engagement in research:

  • Topic selection
  • Formulating research question
  • Recruitment
  • Determining consent procedures
  • Identifying study populations
  • Identifying and selecting intervention/outcomes
  • Study design
  • Agenda setting
  • Monitoring study conduct and progress
  • Data collection
  • Data analysis
  • Interpretation of findings
  • Dissemination and implementation planning
  • Translation
  • Implementation of results into practice
  • Evaluation

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How can MSSU help with your Patient Engagement Needs?

MSSU can support you in the following ways:

  • Consult with research teams on patient engagement;
  • Support research teams through the planning and implementation of patient engagement strategies;
  • Provide resources and tools for patient engagement; and
  • Provide training in patient engagement.

The Patient Engagement Coordinator collaborates with lead investigators at the initiation of a research project to ensure that MSSU projects have an appropriate patient/public engagement strategy. In the best-case scenario, prospective research teams will discuss their engagement strategy prior to conceptualizing a research question.

Submit a research intake request for support with your patient engagement needs.

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Additional Resources for Patient Engagement

 

 

General

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.

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References

 

 

 

(1) Canadian Institutes of Health Research. Strategy for Patient-Oriented Research - Patient Enagement Framework. [Web page] 2014; Available from: http://www.cihr-irsc.gc.ca/e/48413.html.

 

 

This page was last updated: January 2015

 

 

 

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