Why Patient Engagement Matters in Data Science, Engineering and Technology
- 2. We are gathered on the ancestral and current day lands and waters of the Anishinaabeg, Cree, Ojibway-Cree, Dakota and Denesuline peoples, and on the National Homeland of the Red River Métis. In northern Manitoba, we acknowledge the ancestral lands of the Inuit and gratefully acknowledge that our water is sourced from Shoal Lake 40 First Nation. We respect the Treaties that were made on these lands, we acknowledge the harms and mistakes of the past and present, and we dedicate ourselves to move forward in partnership with Indigenous communities in a spirit of reconciliation and collaboration.
- 3. •What is Patient Engagement? •What Patient Engagement is Not •Why We Should Engage & Levels of Engagement •Tools and Resources •Examples of engagement in data science, technology & engineering research •PREPPP Award Today’s Discussion
- 4. •Carolyn Shimmin & Viktoriya Vasylkiv are employees of the George & Fay Yee Centre for Healthcare Innovation 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 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
- 10. What Patient Engagement is NOT
- 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. 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 Principles 14
- 15. “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. On Quantitative Research 15
- 16. 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? 16
- 17. 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? 17
- 18. 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? 18
- 19. To help ensure research uses outcomes that have true meaning to the lives of patients, caregivers, families and communities Why Should I Engage? 19
- 20. 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? 20
- 21. 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? 21
- 22. 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? 22
- 23. 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? 23
- 24. To help co-develop ways to share and implement research findings with patients, informal caregivers and communities Why Should I Engage? 24
- 25. To identify a wider set of research topics or new areas of research Why Should I Engage? 25
- 26. 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? 26
- 27. •SPOR and CIHR requiring engagement •BMJ, CMAJ papers asking for information about patient partners •Many opportunities to publish both on methods (engagement) and your research findings •Can inform limitations of work, what can’t be measured Grants & Publishing 27
- 32. Patient & Public Engagement Team 32 Carolyn Shimmin Patient and Public Engagement Lead Ogai Sherzoi Knowledge Broker Dr. Kate Sibley Director Knowledge Translation
- 33. •Previous session recordings at https://bit.ly/CHIMBvideo •Sign up for our newsletter to hear about upcoming sessions at https://umanitoba.ca/centre-for-healthcare- innovation/newsletter PE Lunchtime Learning Series 33
- 34. •We can help with getting started in patient engagement, providing resources & strategic guidance •Fee-based services also available (e.g., facilitation, planning, team training) •Submit request at https://rcsurvey.radyfhs.umanitoba.ca/survey s/index.php?s=RYE7KYTNNF Free one-hour consult 34
- 35. •PE101 series: https://medium.com/knowledgenudge/pe/h ome KnowledgeNudge Blog 35
- 36. •Guide to Methods in Patient Engagement •Excel budget builder to include in grants (like the PREPPP Award) •Readiness to Engage Workbook for teams •Manitoba low-cost & free counselling list •Recruitment guide •https://umanitoba.ca/centre-for-healthcare- innovation/tools-and-resources#patient- engagement Online Resources 36
- 37. Example of Patient Engagement in Engineering 37
- 38. •Establish a collaboration group with key stakeholders in design of activity prosthetic limbs (i.e. running ‘blades’or ‘swim limbs’) for children • children and their caregivers • leaders from healthcare • academia • industry Child Prosthetics Research Project (England) 38 INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
- 39. 1. Needs assessment • Clinicians – online survey (quick and easy) • Children - creative workshops and paper-based questionnaires that focused on drawing and self-expression Child Prosthetics Research Project (England) 39 INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
- 40. 40 INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE Child Prosthetics Research Project
- 41. 2. Stakeholder groups come together for Starworks Project • Problem definition • Formation of ideas 41 INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE Child Prosthetics Research Project (England)
- 42. 42 INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
- 43. 3. Outcomes •59 problem areas/themes •15 of which were not considered before • E.g., independence to put on and take off prosthetic 44 INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE The National Institute for Health Research (NIHR) Child Prosthetics Research Project (England)
- 44. 4. Given opportunity to continue involvement 45 INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE The National Institute for Health Research (NIHR) Child Prosthetics Research Project (England)
- 45. Example of Patient Engagement in Technology 46
- 46. •Goal: Engage with youth to understand their preferences for an online mental health resource before co-design Digital Therapy for Adolescent Mental Health 47 Fleming T, Merry S, Stasiak K, Hopkins S, Patolo T, Ruru S, Latu M, Shepherd M, Christie G, Goodyear-Smith F. The importance of user segmentation for designing digital therapy for adolescent mental health: findings from scoping processes. JMIR mental health. 2019 May 8;6(5):e12656.
- 47. Engage key stakeholders • School Health Council • Community Youth • Extended family Digital Therapy for Adolescent Mental Health 48 Fleming T, Merry S, Stasiak K, Hopkins S, Patolo T, Ruru S, Latu M, Shepherd M, Christie G, Goodyear-Smith F. The importance of user segmentation for designing digital therapy for adolescent mental health: findings from scoping processes. JMIR mental health. 2019 May 8;6(5):e12656.
- 48. All given a tablet with Mental Heath Apps and Websites Asked to reflect on the following: • current behavior vs. existing resources meeting needs • Preferences for delivery (e.g., app vs. website) • Content delivery (text, video, games, etc.) • Feedback on how making progress Digital Therapy for Adolescent Mental Health 49 Fleming T, Merry S, Stasiak K, Hopkins S, Patolo T, Ruru S, Latu M, Shepherd M, Christie G, Goodyear-Smith F. The importance of user segmentation for designing digital therapy for adolescent mental health: findings from scoping processes. JMIR mental health. 2019 May 8;6(5):e12656.
- 49. •Discussion •Sketching ideas •Telling stories •Wall storms (write ideas on sticky notes, post on wall, then discussed) Digital Therapy for Adolescent Mental Health 50 Fleming T, Merry S, Stasiak K, Hopkins S, Patolo T, Ruru S, Latu M, Shepherd M, Christie G, Goodyear-Smith F. The importance of user segmentation for designing digital therapy for adolescent mental health: findings from scoping processes. JMIR mental health. 2019 May 8;6(5):e12656.
- 50. 51 Fleming T, Merry S, Stasiak K, Hopkins S, Patolo T, Ruru S, Latu M, Shepherd M, Christie G, Goodyear-Smith F. The importance of user segmentation for designing digital therapy for adolescent mental health: findings from scoping processes. JMIR mental health. 2019 May 8;6(5):e12656.
- 51. Digital Therapy for Adolescent Mental Health 52 Fleming T, Merry S, Stasiak K, Hopkins S, Patolo T, Ruru S, Latu M, Shepherd M, Christie G, Goodyear-Smith F. The importance of user segmentation for designing digital therapy for adolescent mental health: findings from scoping processes. JMIR mental health. 2019 May 8;6(5):e12656. Christie GI, Shepherd M, Merry SN, Hopkins S, Knightly S, Stasiak K. Gamifying CBT to deliver emotional health treatment to young people on smartphones. Internet Interventions. 2019 Dec 1;18:100286.
- 52. Example of Patient Engagement in Data Science 53
- 53. Methamphetamine Use in Manitoba: An administrative data study engaging people with lived and living experience Amy Freier, PhD Carolyn Shimmin, Ogai Sherzoi, Jennifer Enns (PhD) Chelsey McDougall, the Methamphetamine Use in Manitoba Research Team, and Nathan Nickel (PhD)
- 55. Admin Data Evidence to Action Evaluation Structure of the Project
- 56. • engage public rightsholders, service providers and knowledge users in the research is to ensure that their first-hand knowledge and perspectives are • Represented in the research process • Reflected in the interpretation of results • Driving analysis to address critical issues they identify in a culturally sensitive way Goals E2A Group • people with lived/living experience of methamphetamine use • First Nations and Métis partners • healthcare workers • Government decision makers • representatives from community organizations, including community health centres, serving Manitobans who use methamphetamine • academic researchers and students Members
- 57. First Meetings – Visioning and Goal Setting Introductory goals • Project Overview – Previous work for Provincial Government Deliverable • Building trusting relationships • Creating a culturally safe space to share information and experiences • Creating common understanding and shared context Outputs: • Guiding Principles for Working Together • Vision Statement
- 58. Building Capacity – Administrative Data and Interpretation • Creating a shared understanding of administrative data and data outputs • Layering data output stories with lived experience stories • Looking at the findings, what story might we tell with regard to people’s past experiences of intersecting methamphetamine use and mental health? • Does this story resonate with your own life/community/career experience? • What’s missing from the story? • Output: Themed interpretation of administrative data analysis
- 59. 0 10 20 30 40 50 60 70 80 90 100 Any Mood Disorders Personality Disorders Pyschotic Disorders Substance Use Disorder* People Who Use Methamphetamine No Methamphetamine Use *Excludes disorders related to 1.9x great er 2.4x greater 5.2x greater 6.1x greater 6.7x greater Prevalence of Mental Disorders in the Study Population Crude percent in the 5 years before first methamphetamine-related contact
- 60. Results 1a: Looking back at mental health Among people using methamphetamine, how many already have a mental health condition? The doctor may have: • Provided a diagnosis • Had a conversation about treatment • Written a prescription • Referred the person for treatment Most people who had a first healthcare contact related to methamphetamine use had already seen a doctor about a mental health condition in the past 5 years Mental health related doctor’s visit Meth-related healthcare contact Over the past 5 years
- 61. The Power of Lived Experience “What is striking is that a lot of individuals who use meth had contact with the healthcare system, which would have been opportunities to intervene and help. This means that people are not being connected to the right help.” “Services are abysmal. Youth have no one to really turn to, which is disheartening.” Theme #2 — Quality of Care Provided in the Healthcare Contact
- 62. Lessons and Reflections • Adapting public engagement for administrative data studies – no one size fits all plan • Managing Expectations • COVID-19 • Ethics + Valuing Lived Experience
- 63. • Moving from consultation and capacity building to collaboration/public directed project Path Forward
- 64. www.mchp.ca
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