Learn the necessities and relationship between patient engagement and data science, engineering and technology.
Presented by Trish Roche, CHI's Knowledge Translation Practice Lead, this presentation is geared towards professionals in data science looking to hone their skills in patient engagement.
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Patient Engagement for Data Science, Technology & Engineering
1.
2.
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. • Trish Roche & Viktoriya Vasylkiv are
employees of the George & Fay Yee Centre
for Healthcare Innovation
• Trish Roche is a member of CADTH’s
Patient and Community Advisory
Committee
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. “The meaningful and active involvement of
patients in the:
• Governance of research;
• Priority-setting of research;
• Conduct of research; and
• Knowledge translation of research.”
What is Patient Engagement?
6
7. Research that is carried out “with” or “by”
members of the public rather than “to”,
“about” or “for” them.
What is Patient Engagement?
7
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?
8
9. • 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:
9
10. • Open house at a research center 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:
10
12. • Improve health outcomes and enhance
healthcare systems;
• 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
12
13. On Quantitative Research
13
“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.
14. 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?
14
15. 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?
15
16. 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?
16
17. To help ensure research uses outcomes that
have true meaning to the lives of patients,
caregivers, families and communities
Why Should I Engage?
17
18. To help ensure the language and content of
the information provided to participants in
studies is appropriate and accessible
Why Should I Engage?
18
19. To help increase participation in a research
study by:
• Ensuring research is appropriate and
acceptable to potential participants
• Improving the information provided so
people can make informed decisions
• Including voices traditionally less heard in
research
Why Should I Engage?
19
20. To conduct data collection and analysis
in a way that will help put participants at
ease and provide more in-depth discovery
Why Should I Engage?
20
21. 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?
21
22. To help co-develop ways to share and
implement research findings with patients,
informal caregivers and communities
Why Should I Engage?
22
23. To identify a wider set of research topics
or new areas of research
Why Should I Engage?
23
24. 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?
24
25. Grants & Publishing
25
• Growing focus in academic & health
institutions
• Engagement plans required for grant
applications (CIHR, Arthritis Foundation,
Canadian Cancer Society & others)
• Engagement required for publication (BMC
Research Involvement & Engagement, Health
Expectations, some CMAJ journals)
• Many opportunities to publish both on
engagement and your research findings
29. Patient & Public Engagement Team
29
Carolyn
Shimmin
Patient and Public
Engagement Lead
Trish
Roche
Knowledge Broker
Ogai
Sherzoi
Knowledge Broker
Dr. Kate
Sibley
Director Knowledge
Translation
30. PE Lunchtime Learning Series
30
• 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
31. Free one-hour consult
31
• 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/surve
ys/index.php?s=RYE7KYTNNF
33. Online Resources
33
• 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
35. Current State of PE
35
• Focus often on research in the later stages
(dissemination)
• Engaging throughout creates more effective
opportunities to create meaningful,
relevant, useful research
37. • Goal: encourage an active lifestyle for
children with prosthetics by being dedicated
to the provision of activity limbs (i.e.
running ‘blades’or ‘swim limbs’) for children
• Establish a Child Prosthetics Research
Collaboration
– children and their families
– leaders from healthcare
– academia
– industry
The National Institute for Health Research (NIHR)
Child Prosthetics Research Project (England)
37
INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
38. 1. Needs assessment: developing an understanding of
current challenges within the system based on the views
of key stakeholder groups
– Clinicians – online survey (quick and easy)
– Children - creative workshops and paper-based
questionnaires that focused on drawing and self-
expression
The National Institute for Health Research (NIHR)
Child Prosthetics Research Project (England)
38
INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
39. The National Institute for Health Research (NIHR)
Child Prosthetics Research Project (England)
39
INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
40. 2. Findings from needs assessment used to inform
Starworks project holding collaborative events with all 4
stakeholder groups:
– Problem definition: presented by each group
– Formation of ideas: guest speakers and/or
exhibitions of innovations
The National Institute for Health Research (NIHR)
Child Prosthetics Research Project (England)
40
INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
42. 2. Findings from needs assessment used to inform
Starworks project holding collaborative events with al 4
stakeholder groups:
– Voting and Picking top 5
– Establishing collaborations
The National Institute for Health Research (NIHR)
Child Prosthetics Research Project (England)
43
INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
43. 3. Outcomes
• 234 ideas
• 59 problem areas/themes
– 15 of which were never considered before
44
The National Institute for Health Research (NIHR)
Child Prosthetics Research Project (England)
INVOLVE (2019) Co-production in Action: Number Two. Southampton, INVOLVE
45. • Public Involvement Workshop
– Theme: large dataset research in palliative
care
– Goal: Explore public views on involvement
within big data research
– Attendees: patient, carer and public
representatives with lived experience of, or
interest in, palliative and end of life care
Big Data Research in Palliative and
End-of-Life Care
46
Johnson H, Davies JM, Leniz J, Chukwusa E, Markham S, Sleeman KE. Opportunities for public involvement in big data research in palliative and end-of-life care. Palliative Medicine.
2021 Oct;35(9):1724-6.
46. • Workshop Layout:
– Introduce key concepts of big data research
– Group discussion around data availability
and access
– Advantages and disadvantages
– Data governance and ethics
– Public discussion on challenges,
opportunities, and value of involvement
Big Data Research in Palliative and
End-of-Life Care
47
Johnson H, Davies JM, Leniz J, Chukwusa E, Markham S, Sleeman KE. Opportunities for public involvement in big data research in palliative and end-of-life care. Palliative Medicine.
2021 Oct;35(9):1724-6.
47. • Lessons Learned:
– Unaware of “big data” concept, research,
type of data, how used in research
– Jargon is a barrier to involvement (e.g.,
“routine data”)
Big Data Research in Palliative and
End-of-Life Care
48
Johnson H, Davies JM, Leniz J, Chukwusa E, Markham S, Sleeman KE. Opportunities for public involvement in big data research in palliative and end-of-life care. Palliative Medicine.
2021 Oct;35(9):1724-6.
48. Big Data Research in Palliative and
End-of-Life Care
49
• Opportunities Identified:
– Raise public awareness of big data research
including terminology, data access, data
content, anonymization and transfer process,
confidentiality
– Involve public in priority setting for data sets
– Humanize data by providing personal
narratives to research results/trends
Johnson H, Davies JM, Leniz J, Chukwusa E, Markham S, Sleeman KE. Opportunities for public involvement in big data research in palliative and end-of-life care. Palliative Medicine.
2021 Oct;35(9):1724-6.
49. Big Data Research in Palliative and
End-of-Life Care
50
• Opportunities Identified:
– Advise future research questions based on
current results
– Involve public in data governance and
advocating/informing curation of new
standardized and collected data
Johnson H, Davies JM, Leniz J, Chukwusa E, Markham S, Sleeman KE. Opportunities for public involvement in big data research in palliative and end-of-life care. Palliative Medicine.
2021 Oct;35(9):1724-6.
51. • Problem: Youth have high rates of
depression, anxiety, and self-harm, but low
rates of help-seeking for mental health
services
• Goal: Engage with youth to understand
their preferences for an online mental
health resource before co-design
• Attendees: Youth of Māori and Pacific
descent
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.
52. 1. 4 Focus Groups
• School Health Council
• Community Youth
• Extended family x2
2. 2 Workshops
Digital Therapy for Adolescent
Mental Health
53
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.
53. All given a tablet with Mental Heath Apps and
Websites
Asked the following:
• current behavior and needs of existing resources
• Preferences for where resources are
• Content delivery (text, video, etc.)
• Gamification
• How receive feedback
Digital Therapy for Adolescent
Mental Health
54
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.
54. • Discussion
• Sketching ideas
• Telling stories
• Wall storms (write ideas on sticky notes,
post on wall, then discussed)
Digital Therapy for Adolescent
Mental Health
55
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.
55. Lessons Learned:
1. Unlikely to succeed if rely on youth help-
seeking
2. Help here and now
3. One idea unlikely to appeal to all
Digital Therapy for Adolescent
Mental Health
56
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.
56. 57
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.
57. Lessons Learned:
“…acknowledging young people’s lack of
help-seeking and diverse preferences is
critical to the successful implementation of
digital mental health interventions.”
Digital Therapy for Adolescent
Mental Health
58
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.
59. • Can you see doing engagement in your
research project? If no, what’s stopping
you?
• What kind of opportunities for engagement
do you see in your own work?
• What do you see as barriers to engaging in
your research?
Discussion (Not Recorded)
60
Hinweis der Redaktion
Hello, Tans(ay), Boozhoo, Aaniin, Waachi’ye and welcome to the George and Fay Yee Centre for Healthcare Innovation’s 2022-23 Patient Engagement Lunchtime Learning Series. This session is an introductory session for beginners, focusing on engaging patients and people with lived and living experience of health conditions in research in the fields of data science, technology and engineering.
We will have about 20 minutes for discussion at the end, but feel free to ask questions or comment in the chat at any time.
To use the chatbox, click the ‘chat’ button at the bottom of your screen and enter your text where it says ‘type message here”. You can send messages to everyone in the meeting, or to specific people (such as myself) using the dropdown box above where you type your message. If you have any trouble with Zoom, please feel free to message me directly at any time.
We have auto-transcription enabled, so you should see closed captioning for the session – if you want to toggle this off or on at any time, you can do so using the “captions” button at the bottom of your screen.
This series is accredited by the Royal College of Physicians and Surgeons of Canada as a group learning activity, and may also be eligible for credits towards requirements of other professional bodies such as the College of Pharmacists of Manitoba and the College of Registered Nurses of Manitoba.
If you’d like to receive credit for your attendance, make sure your full name is shown – you can rename yourself by right clicking on where your video is shown (or would be shown) and selecting “rename”, OR by clicking the “participants” button at the bottom of your screen, finding your name, hovering over it, and selecting “more” – there you’ll also have the option to rename yourself.
We will be sharing a link to the recording on YouTube, and slides, with everyone who registered.
The University of Manitoba is located on Treaty 1 territory, and the original lands of the Anishinaabeg, Cree, Oji-Cree, Dakota, and Dene peoples, and homeland of the Metis Nation. We respect the Treaties that were made on these territories, acknowledge the harms of the past and ongoing colonial violence perpetrated against Indigenous peoples through our systems and institutions. We dedicate ourselves to move forward in partnership with Indigenous communities, in a spirit of reconciliation and collaboration, and recognize and appreciate the resilience and patience of Indigenous peoples who continue to share their wisdom and knowledge with us. We commit ourselves to learning about the impacts of colonization, residential schools, and cultural genocide, and the role we as white settlers continue to play in supporting white supremacy and the status quo.
In the context of patient engagement, we are learning to respect Indigenous ways of knowing and recognize that they represent the origins of scientific discovery and collaboration, and unlearning certain ideals of Western empirical knowledge instilled in us through formal education, in order to gain a more wholistic understanding of our world and ourselves.
One of our key mandates at CHI is supporting patient-oriented research. This means research that…
Governance – e.g. decision-making – steering cttes, strategic planning cttes, ethics review cttes, etc.
The organization INVOLVE in the UK that has been engaging patient partners in health research since 1997 defines engagement as…
Which came out of disability activism in 90s, “nothing about us without us”
Engagement of people with lived and living experience of health conditions can:
When we talk to quantitative researchers, which I’m sure many of you are, it can be difficult to think about how partners can really inform work that is essentially just numerical data. In my education in Biochemistry and Molecular Physiology, I was taught to be an “objective observer” of experiments. But, the data may not be so objective as we think. This quote from Walter and Anderson from their book Indigenous Statistics: A Quantitative Research Methodology describes it well:
Important takeaways from this and similar bodies of work are that:
Researchers who create statistics are human – they have their own biases informed by their social, cultural, economic and political perspectives – and this influences the research data – we aren’t just “counting people”
Population statistics create the accepted reality of things most of us think they merely describing
The social, cultural, and economic phenomena that are chosen for inclusion in our research, and also those which are excluded, provide a reflection of the society’s changing social, cultural and economic priorities and norms
And we’ve had a number of projects where people with lived/living experience have been able to interpret quantitative findings like statistics by looking at the story they are telling, and what might be missing from that story (i.e. the context in which these findings occur) and whether the story that these findings tell resonate with the stories of our partners with experiential knowledge
To help identify research priorities that matter most to people living with the health condition being researched
In a rheumatoid arthritis study, researchers felt the number one research priority for people with lived experience was pain management, when they engaged patient partners in a research priority-setting exercise, they discovered that fatigue was the number one priority, and so they changed their research project.
To help shape and clarify research questions so they reflect the needs and concerns of people with lived and living experience
In a mental health study people with lived experience helped craft the study name and materials to reduce the potential for stigma and to reframe the goal of the study as a movement toward emotional well-being rather than away from a mental health challenge. The anticipated benefit of this input is improved recruitment of study participants and greater acceptance of the study by the community in which it is occurring.
To help ensure the methods proposed for the study are appropriate, acceptable and sensitive to the very real context of people’s lives
In a large pragmatic study comparing surgery to antibiotics – over 800 patients were surveyed about their preferences for these treatment options and input was used to shape the proposal – including changing the study inclusion criteria, study logistics and criteria for “failure” for one of the arms.
In a fall prevention study, caregivers of aging parents who have experienced falls served as representatives on the project’s data safety monitoring board. Caregiver representatives serving in this capacity can offer interpretations of benefit, risk and data analysis from a lived-experience perspective.
To help ensure research uses outcomes that have true meaning to people with lived and living experience
Stroke survivors serving as patient partners on a study about a new drug identified “home-time” or the number of days when a patient is living at home, not hospitalized or in another institution, as an important new outcome.
To help ensure that the language and content of the information provided to participants in studies is appropriate and accessible (e.g. surveys, consent forms
In a chronic pain study, the informed consent document was developed with patient partners to make it understandable to study participants. This involvement helped to improve recruitment because potential participants felt more informed and comfortable.
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 choices; and helping to include voices that are traditionally less heard in research
In a pediatric surgery study, parent partners shared that, were they being approached to participate in the study, they’d feel more comfortable if the person discussing the risks and benefits of surgery (and involvement in the study) was a surgeon. When that adjustment was made to the protocol, rates of recruitment increased.
You may even have partners involved in collecting data; this is particularly common in participatory action research. For example, a peer interviewer may help collecting much richer data, as participants feel more open to sharing experiences with someone who has a similar story.
Partners may also be involved in analysing data, with their unique perspectives and potential to notice things that researchers without lived experience may miss, helping to avoid potential gaps in the “story” the data can tell.
There’s also the involvement of people with lived/living experience on data safety monitoring boards. In a falls prevention study, caregivers of aging parents who have experienced falls served as representatives on the project’s data safety monitoring board. Caregiver representatives serving in this capacity can offer interpretations of benefit, risk and data analysis from a lived-experience perspective
Additionally, partners may be involved in interpreting findings, identifying pieces that are relevant to their lived and living experience, and informing recommendations that can directly impact the lives of patients, caregivers and communities.
For example, in a project using administrative data looking at substance use in Manitoba, researchers were working on creating summaries of the data they found and wanted people with lived and living experience to help interpret the findings. They used a storytelling approach to find out what the data meant to them, what story it was telling, and how this compared to their realities and the stories of people they know and love who use substances. This helped the research team to get a more clear picture of the situation and perceived needs that can then help inform decision- and policy-makers developing programs to support people struggling with substance use.
To help co-develop ways to share your research findings with other patients, caregivers, families and communities. This may include having partners as co-presenters, or keynote speakers, at conferences or symposia, or even in a classroom or cohort of students who may not have much real-world experience; it can also include co-developing guidelines or infographics to inform clinical practice or policy, as well as co-authorship on peer reviewed publications.
- Involving people w/lived experience in the early stages can help you figure out how to explain your work in lay language from the start, will prepare for sharing work with wider public in later KT stages
Engaging at any stage of your project or career can be beneficial. As you build relationships and communicate with people who have lived and living experience, you’ll get to learn more about different perspectives, systemic barriers, and needs and this will inevitably lead you to identify new and novel avenues of research.
We’ve heard anecdotally from clinician researchers how involving patients in research decision making, particularly about outcomes of interest, has sparked entirely new areas of research they would not have considered without engagement. For example, in a study following patients after major thoracic surgeries, in addition to important clinical outcomes, patients identified key quality of life indicators that were important to them – things like being able to go for a walk after dinner, or use stairs regularly. In a study with survivors of sepsis, patient involvement provoked ideas beyond clinical measures of mortality and morbidity, leading to an entirely new study examining the impact of sepsis on frailty.
And then finally, we engage to help ensure that research reflects the concerns, interests and values of those with lived/living experience, and that money and resources are used adequately.
We see this in Indigenous community engagement in health research and things like OCAP principles, where research that is being done reflects what communities identify are important versus what researchers think are of importance. This can include grounding research in a strengths-based and resiliency-based lens vs. a deficit lens, and making sure design and methodology reflects the values of communities.
And if those reasons don’t speak to you, it’s also important to consider that the health services and research landscapes are increasingly emphasizing the importance of patient engagement in health research and services work.
More and more, institutions are recognizing the importance of lived experience and other ways of knowing – e.g. at UM, “forging connections to foster high-impact community engagement” is one of the current strategic priorities; Manitoba Shared Health emphasizes person-centered care and engagement of patients and the public in its MQLF, CPSP and related activities.
Increasingly, funders are asking applicants to allocate a portion of their proposed funding to compensate people with lived experience, and demonstrate a well-thought out process for involving them in research decision-making
This also includes health systems and service delivery organizations, who often provide funding for health-related research (such as Shared Health and hospital foundations)
Additionally, many journals are involving patient partners in the review process (such as BMJ), while others even require reporting of engagement in the research process
Have heard from researchers, in hindsight, that involving people early on would have helped identify limitations they could have overcome – and even if you engage at the dissemination or reporting stage, people could help you identify strengths and limitations for publication that you may not have considered
This presents a unique opportunity in research as well, in that if you engage early and keep detailed records of the methods and outcomes of engagement, you can report on BOTH your research and the engagement process itself
An important aspect when planning engagement, is thinking about the level of decision-making power that will be shared with patients, caregivers, families and communities you want to work with. Whatever level you choose, should be made clear to patient partners what decisions they are able to inform, and how flexible you are able to be about these decisions (e.g. using a specific measure may be non-negotiable to ensure clinical relevance and the ability to compare with other studies)
Consultation – lowest level, primary goal to obtain feedback or input, decision-making power lies solely w/researchers.
Often about getting feedback from patients on research priorities or questions that researchers have already developed.
Engagement approaches: surveys; forums, public and town hall meetings; focus groups; interviews;
** Very different from collecting data from participants about experiences with health conditions, or treatments, as their input is on the research process itself, and related decisions
Involve; working directly w/partners, especially in planning stage, to ensure hopes and concerns are understood & considered, and research process directly reflects what they say. A step up from consultation, because people actually have some say in decisions around the research process (priorities, question, design, methods, interpretation, dissemination), but researchers still hold ultimate decision-making power.
Workshops, advisory committees
Collaborate: actively partnering with people w/lived and living experience to make shared decisions about aspects of the research, including things like grant writing or publication.
Participatory decision-making, patient partners as research team members
Requires commitment, trust and relationship-building, openness, flexibility, time, resources, and adequate planning and preparation
Patient and Public-Directed
Sometimes also referred to as ‘user-controlled research’ or ‘citizen science’, this is when patients and/or members of the public actively control, direct and manage the research process.
They decide issues and questions, and how to do the research (and are often the ones doing it)
Role of researcher may be to take backseat, and provide support through training, research skills or infrastructure, and administrative needs
Decision-making power is in hands of patient and public partners
Can be thought of as a spectrum, where at one end we have a “push” of information outward from the research team to people with lived/living experience, and on the other end we have people taking on the role of researcher themselves and leading the process. This would include grassroots research initiatives, for example, led by community organizations or groups. And there is all this space in between where various degrees of decision-making power and control over different aspects of the research process sit.
Now I’ll share some tools that can help you better understand how you might do engagement in your own work, and plan out a tentative engagement strategy. Ideally, you would work directly with patient and public partners to decide how to engage, and what to engage about, but that’s not always feasible, so a common approach that works well is to work with your team to develop a draft plan, and bring that to partners to rework and refine.
Can help you work through the process of patient engagement, including it in your grant, compensating partners, developing strategies for recruiting and engagement, practical advice for the steps involved in actually doing engagement
2. Identify research questions that are important right now
3. Providing personal narratives removes speculation as to why the results are the way they are, instead, right now lots of papers discuss potential reasons without certainty “it may be because x,y,z”
2. Public pushing the agenda of the need and importance of such data can help push it to decision makers
App: Gamified Cognitive Behavioral Therapy
- Great opportunity to get started in PE, prior to incorporating into larger grants
Viktoriya – using measures of SES, linked to health data to predict CVD; did not relate to nutrition or exercise
