Monthly Bulletin of the Alliance's Learning Health System |
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Black-led Community Research @ WHIWH |
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AI to Support Primary Health Care |
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Update on Virtual Care Study |
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Learning Events & Opportunities |
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Get Involved: Research & Sharing |
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“Statistics only go so far"
Black-led research at Women’s Health in Women’s Hands
unites research & community engagement
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Women’s Health in Women’s Hands (WHIWH), a community health centre in downtown Toronto with a mandate to support health and wellness for racialized women in the GTA, has developed a robust program of community-based, participatory research and knowledge translation & exchange (KTE). This work guides their programs and services and supports staff, clients, and community-members in decision-making. It also informs provincial and federal policymakers such as the Public Health Agency of Canada (PHAC), Health Canada, the Ontario Ministry of Health, and others. While remaining academically rigorous, WHIWH research uses innovative strategies for recruitment and engagement of community members.
Muna Aden is the Manager of Research and Programs at WHIWH. She shared some insights into their ongoing study of HIV prevalence among African and Caribbean communities in Toronto and Ottawa. Known as the A/C study, it’s a community-developed alternative to traditional surveillance-style monitoring of HIV prevalence. The research team includes peer recruiters and interviewers from within the African and Caribbean Black (ACB) communities. They conduct outreach in churches and community centres, at festivals, and in other community settings. Data is still being analyzed and early findings have been shared back to the community through virtual world cafés (built on the café scientifique model) and a community report.
The A/C study began nearly 10 years ago, after PHAC launched an HIV surveillance research study known as E-track. Wangari Tharao, now the Director of Research and Programs at WHIWH, and Winston Husbands, a Senior Scientist at the Ontario HIV Treatment Network (OHTN) saw the need for a different approach. In partnership with community members, other academic researchers and CHCs – TAIBU, Centre Francophone and Black Creek CHC in Toronto and Somerset West in Ottawa – they designed and implemented a two-city, multi-site, community-based alternative. Data collection wrapped up in December 2019, and virtual knowledge exchange events began in early 2020. The project’s extensive KTE plan extends into 2023, supported by a three-year KTE grant from the Canadian Institutes of Health Research (CIHR). Meanwhile, data analysis is continuing and will lead to several academic papers and reports for stakeholder organizations.
For Aden, the most striking findings of the A/C project are how structural barriers impact access to HIV testing and health care, which can contribute to community spread. Discrimination and harassment rooted in racism, sexism, and immigration status are particularly prevalent. Although she has been a public health professional for 11 years, it was her work as a peer HIV tester and coordinator of the A/C study that helped Aden truly see the structural barriers that create vulnerability – as well as the potential of community-based programming to help dismantle them. “Statistics can only go so far,” she says. “In those sessions with community members, you see the multiple intersecting social locations and how they impact people’s health. That brings home the need to dismantle these barriers to meet targets for testing and treatment.”
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Researchers at Western are teaching a computer
to identify primary care clients at risk
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Every day, clinicians across our sector enter vast amounts of client data into their EMRs, and it is gathered up into our shared Business Information Reporting Tool (BIRT) system. As this dataset grows and becomes more complex, it can help us better understand the complex web of factors that impact individual and population health. Combing through all that data in search of patterns and then identifying what those patterns predict for each client is a near-impossible task. Researchers at Western University are developing a learning algorithm – a form of artificial intelligence – to help.
The learning algorithm Kueper is building will be able to peer into large primary care datasets, such as the BIRT data, in search of complex patterns. A traditional EMR query algorithm relies on programmers to identify and assign weights to a predetermined set of risk factors, but this learning algorithm will go further: It will learn on its own to identify and weight risk factors, both clinical and social, and to find clients with similar trajectories.
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“My motivation has always come from the front line, but I don’t want to be a
front-line worker myself; it’s not where my skillset lies. This lets me support that work with my own abilities.” - Jacqueline Kueper
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“We will not be those tech people who swoop in and tell you
what we think you need. We want to be the opposite of that.”
- Dr. Daniel Lizotte
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Aligned values are a key driver of this research. Prior to her studies, Kueper worked in a shelter, where she became interested in person-centred health and realized she wanted to do work that would support interprofessional primary healthcare and the determinants of health. “My motivation has always come from the front line, but I don’t want to be a front-line worker myself; it’s not where my skillset lies. This lets me support that work with my own abilities.” Lizotte is involved with a group of researchers at Western who are interested in learning health systems, which is where he met Dr. Jennifer Rayner and recognized the potential for collaboration between the Alliance and his lab. In addition to epidemiology and computer science, Lizotte is deeply interested in advancing health equity.
One of the hallmarks of this project is co-creation. To ensure the new tool will support clinicians and make their work easier, Kueper and Lizotte are involving them throughout the design and development process. “We really want a participatory design element to this,” says Kueper. “It’s not that we want to build the thing and then drop it off.” Lizotte echoes this sentiment, stating that “We will not be those tech people who swoop in and tell you what we think you need. We want to be the opposite of that.”
At the outset of the project, Kueper and Lizotte met with a small group of Alliance clinicians to identify four priority conditions to get started with: Hypertension, Diabetes, Depression, and COPD. Kueper has been training the algorithm to recognize when a client with one of those conditions is likely to develop another. She hopes to begin proof- of-concept demonstrations with more providers this summer.
Feedback from those demonstrations will inform refinements to the algorithm – such as additional conditions to watch for. This in turn will lead to a product that may be ready for a pilot study next year.
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Alliance Research Update:
Early Learnings from Phase II of the Virtual Care study
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In December, we shared some rapid learnings from the first study in our virtual care series. This study focuses on how the shift to virtual delivery of primary care has impacted access to care, provider-client relationships, quality of care, and efficiency. What we shared in December were the qualitative results – stories – from both providers and clients, collected through phone interviews. Our research team has now completed the subsequent step, which was to extract de-identified practice data from participating centres’ Electronic Medical Record (EMR) systems for the period from April through June of 2020 and the equivalent period in 2019.
This EMR data included information about encounters – which providers were seen, what issues were addressed, and what services were provided – as well as sociodemographic data about the clients. The team was looking for data that would shed light on which types of care and which types of clients were best suited to virtual appointments, and whether there were social or structural barriers that would make it more difficult for certain clients to receive care this way.
Here are some of the key findings:
- There was a significant decrease in primary healthcare usage in April and May of 2020 compared to 2019, but a slight increase in primary healthcare usage in June of 2020 compared to 2019.
- There was a rapid shift from in-person to remote appointments across the board. When the province began to reopen in June, the proportion of remote appointments decreased slightly.
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Almost all remote appointments were conducted by phone.
Surprisingly, the data did not reveal any sociodemographic barriers to accessing care remotely. Changes in primary care utilization and how appointments took place were consistent regardless of clients’ age, income, education, ethnicity, or language, and regardless of whether the CHC was urban or rural.
The primary sources of variation in the shift to remote care were the types of providers seen and issues addressed. Encounters related to mental health, social and material support, or gastroenterology were the most likely to be seen remotely. Those related to substance use, pain management, infectious disease, or skin conditions were the most likely to be conducted in person.
Our research team is preparing individualized reports for the CHCs who participated in the study. This will help leaders and providers in those centres to better understand how the shift to virtual care has played out among their clients and providers and respond to any locally-observed barriers.
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Learning Events and Opportunities |
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Thursday, February 18 & Friday, February 19, 2021, 9:00-10:30am: Data in a Changing World - Knowledge Management Professional Learning Event. Currently underway - this four-part series showcases how Alliance member organizations are becoming a Learning Health System together. Open to data management coordinators, BIRT coordinators and clinical managers in Alliance member organizations. Non-members are welcome to join, too. Even if you've missed the first two sessions, it's not too late to register for Thursday and Friday! $25.00 per session. Email Brian Sankarsingh to sign up.
Thursday, February 18 and Thursday March 19, 2021, 12:00-1:00pm: Planning for an Unexpected Emergency: A Caregiver Guide. This two-part webinar will address the issues and concerns of caregivers when developing and implementing a crisis plan, and discuss the psychological, emotional, and practical components of such a plan. Presented in English and French by the Ontario Caregiver Organization. Free. Information and links to register here.
Thursday, March 4, 2021, 8:30am-3:30pm: Advancing Excellence in Transgender Health. This virtual conference includes client stories as well as presentations on cultural humility, inequities in access to care, navigating primary-care screening, and more. Special focuses on caring for transgender and nonbinary youth and older adults. Presented by the Nurse Practitioners Association of Ontario. $40-65. Registration and information here.
Wednesday, May 5 - Friday, May 7, 2021: 30th Annual Canadian Conference on HIV/AIDS Research. This year's theme is Maintaining Our Focus. Presented by the Canadian Association for HIV Research. Early bird fees $100-200 until March 29. Learn more here or register here.
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Framework for communication with structurally vulnerable communities during a pandemic emergency. Researchers at Access Alliance, University of Toronto, and Ryerson University have developed a framework that can guide organizations in planning equity-informed communications with structurally vulnerable communities during a public health emergency. This framework is based on a systematic review of existing resources and interviews with selected providers about their experiences and was just published the peer-reviewed, open-access journal EC Emergency Medical and Critical Care. Read it here, and check out the poster at our virtual conference, Power in Community, in June.
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Get Involved: Research & Sharing Opportunities |
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Wanted: Primary healthcare clients to share their experiences with virtual appointments. Anyone from Ontario can participate if they have had at least one real-time health care appointment by phone or video with a family doctor, general practitioner, nurse practitioner, or another healthcare professional in their practice. To participate, complete a 15- to 20-minute survey in English or French. For more information, see the recruitment posters here in English and French or email Rachelle Ashcroft.
How have primary healthcare leaders managed the pandemic crisis and enabled the shift to virtual care? To find out, the Alliance and our research partners are asking primary healthcare teams to answer a five-minute, six-question online survey. Your ED may have received a formal invitation by email from the research team, and they are encouraged to share it with all managers in your organization. The survey is completely anonymous, and participation is optional. For more information, contact Agnes Grudniewicz.
Hiring: The Centre on Drug Policy Evaluation, housed within St. Michael's hospital, is recruiting a research manager. The successful candidate will oversee several longitudinal studies of the same cohort of people who use drugs in Toronto. Current studies involving this cohort include evaluations of supervised consumption services integrated within community health agencies, safer supply programs, and impacts of COVID-19 on people who use drugs in Toronto. See the full job posting here.
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Your older adult clients can help evaluate a new self-management tool: Keep Well is a web-based application created by and for seniors at the North York General Hospital and the University of Toronto, to empower them to manage their chronic conditions through positive lifestyle changes. Participants will use the app at home for six months and answer two questionnaires. For more information, visit this page or send questions to [email protected].
Help improve online resources about fetal alcohol spectrum disorder (FASD). Health Nexus is currently updating its FASD information webpage for Ontario, and they're looking for feedback on the existing page to help guide their decisions. Check out the old page here and provide feedback through this short survey by Wednesday, February 24. Even if you've never looked at the website before of don't know much about FASD, your opinion is valuable! Contact Malou Gabert for more information.
Care Coordination during COVID-19: It’s not too late to take part in this study by the Alliance and our research partners! They’re exploring how complex care programs in Ontario’s interprofessional primary healthcare organizations have been impacted by COVID-19, and whether embedded care coordination makes a difference. Findings will generate new best-practice recommendations. One staff member from each organization should complete this 10-minute online survey. To learn more, email Donatus Mutasingwa.
Help All.Can Canada improve the pre-diagnosis experience of people with cancer: Provider are invited to complete this 10-minute survey (also available in French). Together with client interviews and a literature review, they will contribute to a research project that identifies areas for improvement in care along the diagnostic pathway. More information: [email protected].
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