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PE101: Introduction to Patient Engagement

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This document discusses patient-oriented research and patient engagement in health research. It defines patient-oriented research as research that engages patients as partners, focuses on patient priorities, improves outcomes, and aims to apply knowledge to improve healthcare. Patient engagement is defined as meaningful involvement of patients in governance, priority-setting, conducting, and knowledge translation of research. The document outlines guiding principles of engagement, why engagement is important, levels of engagement, and tools/resources to support engagement. It emphasizes inclusion of diverse voices and conducting research with patients, not on them.

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PE101: Introduction to Patient Engagement
What is Patient-Oriented Research? What is Patient Engagement? Guiding Principles What Patient Engagement is Not Core Beliefs Why We Should Engage & Levels of Engagement Tools and Resources PREPPP Award Todays Discussion
Carolyn Shimmin is employed by the George and Fay Yee Centre for Healthcare Innovation as the Patient and Public Engagement Lead Disclosure
What is Patient- Oriented Research?
Engages patients as partners; Focuses on patient-identified priorities; Improves patient outcomes; Is conducted by multidisciplinary teams in partnership with relevant stakeholders; AND Aims to apply the knowledge generated to improve healthcare systems and practices SPOR Definition of Patient-Oriented Research 5
What is Patient Engagement in Health Research?
The meaningful and active involvement of patients in the: Governance of research; Priority-setting of research; Conducting of research; and Knowledge Translation of research. What is Patient Engagement? 7
Research that is carried out with or by members of the public rather than to, about or for them. What is Patient Engagement? 8
People with lived/living experience of a health issue (including patients, informal caregivers, families, friends and communities) having a say in decision-making about the research process. What is Patient Engagement? 9
What Patient Engagement is NOT
People being recruited to a clinical trial or other research study to take part in the research People completing a questionnaire or participating in a focus group as part of a research study Science festivals open to the public with debates and discussion about research What Patient Engagement is NOT: 11
Open House at a research centre where members of the public are invited to find out about research Raising awareness of research through media such as television programs, newspapers and social media Sharing research findings to participants, colleagues or members of the public What Patient Engagement is Not: 12
Guiding Principles And Core Beliefs
Inclusiveness Support Mutual Respect and Partnership Co-building Co-learning Reciprocal relationships Transparency, honesty and trust Guiding Principles 14
The engagement of patients in health research will lead to: Improved health outcomes and an enhanced healthcare system; Increase the quality, appropriateness, acceptability, transparency and relevance of research; Ensure that health research addresses issues of importance to people with lived experience of a health condition. Core Beliefs 15
People who may not identify as patient because: Unable to access healthcare system because of geographical and/or systemic barriers Living with mental health or substance use issues where taking up the label of patient is associated with stigma Refuse to engage or prematurely exit because of disrespectful or unresponsive care Excludes the Involvement of Individuals 16
Valuing All Voices 17
Why Should I Engage?
To help identify research priorities that matter most to people living with the health condition, as well as their informal caregivers, families and communities. Why Should I Engage? 19
To help shape and clarify research questions so that they reflect the needs and concerns of people living with the health condition, as well as informal caregivers, families and communities. Why Should I Engage? 20
To help ensure the research methods proposed for the study are appropriate, acceptable and sensitive to the very real context in which people with lived experience live, work and play Why Should I Engage? 21
To help ensure research uses outcomes that have true meaning to the lives of patients, caregivers, families and communities Why Should I Engage? 22
To help ensure the language and content of the information provided to participants in studies (e.g. questionnaires, patient/participant pamphlets, etc.) is appropriate and accessible Why Should I Engage? 23
To help increase participation in a research study by: Making sure the research is appropriate and acceptable to potential participants Improving the information provided so people can make informed decisions Helping to include voices traditionally less heard in research Why Should I Engage? 24
To conduct data collection (e.g. co- facilitating focus groups, interviewing peers) in a way that will help put participants at ease and provide more in-depth discovery Why Should I Engage? 25
To interpret research findings from the perspective of people with lived/living experience and inform recommendations that will help improve the lives of patients, caregivers and communities. Why Should I Engage? 26
A Special Note on Quantitative Research Statistics are powerful persuaders. As systematically collected numerical facts, they do much more than summarize reality in numbers. They also interpret reality and influence the way we understand society. The researchers who create statistics leave their mark on them not just because people are biased in overt or conscious ways, but also because social, cultural, economic, and political perspectives infuse the research data even when we think we are just counting people. Walter M. & Andersen C. (2013). Indigenous Statistics: A Quantitative Research Methodology. pp. 7.
To help co-develop ways to share and implement research findings with patients, informal caregivers and communities Why Should I Engage? 28
To identify a wider set of research topics or new areas of research Why Should I Engage? 29
To help ensure research reflects the concerns, interests and values of the public and that money and resources are used efficiently Why Should I Engage? 30
Levels of Engagement
Levels of Engagement 32
Participatory Approaches 33
Tools and Resources
Carolyn Shimmin Patient and Public Engagement Lead Patient & Public Engagement Team Ogai Sherzoi Knowledge Broker Dr. Kate Sibley Director Knowledge Translation
Monthly Lunchtime Learning Series
Free One Hour Consult and Research Team Support
Patient Engagement Blog Series
Online Patient Engagement Budget Builder
Methods of PE: A Guide
Readiness to Engage Workbook
Up-to-Date Counselling Resource List for PE
How to Write a Callout for Patient and Public Partners
Incorporating Trauma-Informed Intersectional Analysis
Validating a Trauma-Informed Intersectional Framework
Survey of Manitoba Perspectives
Questions? 47
Next Lunchtime Learning Session 48
PE101: Introduction to Patient Engagement

More Related Content

PE101: Introduction to Patient Engagement

  • 2. What is Patient-Oriented Research? What is Patient Engagement? Guiding Principles What Patient Engagement is Not Core Beliefs Why We Should Engage & Levels of Engagement Tools and Resources PREPPP Award Todays Discussion
  • 3. Carolyn Shimmin is employed by the George and Fay Yee Centre for Healthcare Innovation as the Patient and Public Engagement Lead Disclosure
  • 5. Engages patients as partners; Focuses on patient-identified priorities; Improves patient outcomes; Is conducted by multidisciplinary teams in partnership with relevant stakeholders; AND Aims to apply the knowledge generated to improve healthcare systems and practices SPOR Definition of Patient-Oriented Research 5
  • 6. What is Patient Engagement in Health Research?
  • 7. The meaningful and active involvement of patients in the: Governance of research; Priority-setting of research; Conducting of research; and Knowledge Translation of research. What is Patient Engagement? 7
  • 8. Research that is carried out with or by members of the public rather than to, about or for them. What is Patient Engagement? 8
  • 9. People with lived/living experience of a health issue (including patients, informal caregivers, families, friends and communities) having a say in decision-making about the research process. What is Patient Engagement? 9
  • 11. People being recruited to a clinical trial or other research study to take part in the research People completing a questionnaire or participating in a focus group as part of a research study Science festivals open to the public with debates and discussion about research What Patient Engagement is NOT: 11
  • 12. Open House at a research centre where members of the public are invited to find out about research Raising awareness of research through media such as television programs, newspapers and social media Sharing research findings to participants, colleagues or members of the public What Patient Engagement is Not: 12
  • 14. Inclusiveness Support Mutual Respect and Partnership Co-building Co-learning Reciprocal relationships Transparency, honesty and trust Guiding Principles 14
  • 15. The engagement of patients in health research will lead to: Improved health outcomes and an enhanced healthcare system; Increase the quality, appropriateness, acceptability, transparency and relevance of research; Ensure that health research addresses issues of importance to people with lived experience of a health condition. Core Beliefs 15
  • 16. People who may not identify as patient because: Unable to access healthcare system because of geographical and/or systemic barriers Living with mental health or substance use issues where taking up the label of patient is associated with stigma Refuse to engage or prematurely exit because of disrespectful or unresponsive care Excludes the Involvement of Individuals 16
  • 19. To help identify research priorities that matter most to people living with the health condition, as well as their informal caregivers, families and communities. Why Should I Engage? 19
  • 20. To help shape and clarify research questions so that they reflect the needs and concerns of people living with the health condition, as well as informal caregivers, families and communities. Why Should I Engage? 20
  • 21. To help ensure the research methods proposed for the study are appropriate, acceptable and sensitive to the very real context in which people with lived experience live, work and play Why Should I Engage? 21
  • 22. To help ensure research uses outcomes that have true meaning to the lives of patients, caregivers, families and communities Why Should I Engage? 22
  • 23. To help ensure the language and content of the information provided to participants in studies (e.g. questionnaires, patient/participant pamphlets, etc.) is appropriate and accessible Why Should I Engage? 23
  • 24. To help increase participation in a research study by: Making sure the research is appropriate and acceptable to potential participants Improving the information provided so people can make informed decisions Helping to include voices traditionally less heard in research Why Should I Engage? 24
  • 25. To conduct data collection (e.g. co- facilitating focus groups, interviewing peers) in a way that will help put participants at ease and provide more in-depth discovery Why Should I Engage? 25
  • 26. To interpret research findings from the perspective of people with lived/living experience and inform recommendations that will help improve the lives of patients, caregivers and communities. Why Should I Engage? 26
  • 27. A Special Note on Quantitative Research Statistics are powerful persuaders. As systematically collected numerical facts, they do much more than summarize reality in numbers. They also interpret reality and influence the way we understand society. The researchers who create statistics leave their mark on them not just because people are biased in overt or conscious ways, but also because social, cultural, economic, and political perspectives infuse the research data even when we think we are just counting people. Walter M. & Andersen C. (2013). Indigenous Statistics: A Quantitative Research Methodology. pp. 7.
  • 28. To help co-develop ways to share and implement research findings with patients, informal caregivers and communities Why Should I Engage? 28
  • 29. To identify a wider set of research topics or new areas of research Why Should I Engage? 29
  • 30. To help ensure research reflects the concerns, interests and values of the public and that money and resources are used efficiently Why Should I Engage? 30
  • 35. Carolyn Shimmin Patient and Public Engagement Lead Patient & Public Engagement Team Ogai Sherzoi Knowledge Broker Dr. Kate Sibley Director Knowledge Translation
  • 37. Free One Hour Consult and Research Team Support
  • 39. Online Patient Engagement Budget Builder
  • 40. Methods of PE: A Guide
  • 43. How to Write a Callout for Patient and Public Partners
  • 45. Validating a Trauma-Informed Intersectional Framework
  • 46. Survey of Manitoba Perspectives