33 minute read
In brief
IN BRIEF Ontario’s doctors want to work with government to fix health care
With the provincial legislature returning tomorrow, Ontario’s doctors reiterate their commitment to work with the government to solve the pressing issues facing health care.
The Ontario Medical Association has proposed “three solutions” that could be implemented in the short term that would both improve patient care and relieve pressure on the health-care system: 1. Licensing more foreign-trained physicians, through increased residency spots and a government assessment program to assess who is ready to practice now. We also need more nurses to keep operating rooms and emergency departments open. 2. Creating standalone centres to perform less complicated outpatient surgeries and procedures covered by
OHIP. These publicly funded Integrated Ambulatory Centres would ease the burden on hospital and reduce wait times. The OMA is also ready to work with the government to create a centralized referral system so that patients most in need of high-demand surgeries and procedures, regardless of where they live, are distributed among all available doctors 3. Creating more hospice beds and palliative care services to improve the patient experience, support caregivers and reduce pressures on emergency departments.
“Our three solutions come from the experience doctors have of going to work every day and night with the goal of providing high-quality, compassionate patient care,” said OMA President Dr. Rose Zacharias. “We see the problems first-hand and are committed to working with the government to fix them.”
While these “three solutions” could be implemented in the short term, comprehensive repairs are also needed to address issues such as long-term funding and the needs of an ageing population.
The Ontario Medical Association has a detailed roadmap for what needs to be done over the next four years, Prescription for Ontario: Doctors’ 5-Point Plan for Better Health Care.
“Ontario’s doctors have a plan to help more patients get care faster,” said OMA CEO Allan O’Dette. “Solutions like licensing foreign-trained physicians, opening more centres for outpatient procedures, and creating more hospice and palliative care beds will help address the challenges we are facing in Ontario’s health-care system.” ■ H
Continued from page 4 Health workforce needs policy attention
Since 1950, regulation for each new health profession in the province has been introduced through a private member’s bill rather than through the more complex public legislation used in other provinces.
In Alberta, proposed legislation to regulate the mental health and substance use workforce has been stalled since 2018 due to concerns about the impact on addiction counsellors and Indigenous practitioners, whose training and competencies draw more on lived experience and cultural knowledge.
We hear similar concerns from our partners in the peer support and addiction sectors, who have developed robust competency and certification frameworks but are wary of regulatory frameworks that privilege graduate-level professional education above other forms of lived knowledge and training.
In 2021, we held a virtual policy dialogue with diverse provider groups, frontline workers, and policy makers. Sixty participants from across the country met and identified a number of other key priorities that need immediate attention in this critical landscape. Firstly, they recommended better mental health and substance use workforce data collection. They also recommend coordinated workforce planning that includes employment-based benefit programs and publicly-funded services. They also stressed the need for
increased diversity and cultural competence and access to regulation that recognizes lived experience and cultural knowledge. So, what’s the solution? Regulatory reform is needed urgently on two tracks. First, psychotherapy and counselling therapy should be regulated across the country as soon as possible. Second, policy makers need to listen to the full range of providers to develop modern, flexible approaches to regulation and certification that work for the workforce as a whole. A modern regulatory framework will be key for implementing federal commitments to develop mental health and substance use healthcare standards and ensure equitable access to high-quality services for all. Each province and territory could continue their own approach to workforce regulation. But there is also an opportunity for the federal government to spearhead a less fragmented approach by fully integrating flexible, modern workforce regulation into a new national health workforce registry. This registry would facilitate robust workforce planning to help ensure the future workforce can meet the population’s needs. Regulation is a key priority for strengthening the capacity of the mental health and substance use health workforce. Next up, we need a broader health workforce strategy for Canada. ■ H Mary Bartram is the Director of Policy at the Mental Health Commission of Canada. Kathleen Leslie is an Assistant Professor at Athabasca University.
The Canadian Academy of Health Sciences (CAHS) announced the recipients of a newly created honour designed to celebrate Canadians who have made an exceptional contribution to Canada’s health care system.
The recipients of the award were chosen by the 2021-2022 Presidents: Dr. Sioban Nelson (President), Dr. Jay Cross (President-Elect) and Dr. Chris Simpson (Past President).
CAHS chose five Canadians whose outstanding contributions to Canada’s health care system merited recognition: • The Right Honourable
Paul Martin, PC • Camille Orridge • Sharon Sholzberg-Gray • Michèle Stanton-Jean • Siila Watt-Cloutier
“We are pleased to recognize these five outstanding individuals,” said Dr. Chris Simpson, Chair of the Presidents’ Award Committee. “It was important for CAHS to recognize their life-long contribution and dedication to public life, the healthcare system and social justice.”
Dr. Jay Cross, CAHS President (2022-2023) thanked the recipients. “On a daily basis our work as health scientists is impacted by the efforts, commitment, and passion of individuals like them. The five recipients of the Presidents’ Award were selected to celebrate their exceptional contribution to our health care system.” ■ H
he release of a new dataset sheds light on biological and clinical risk factors for children living with cerebral palsy (CP).
The Cerebral Palsy Integrated Neuroscience Discovery Network (CPNET), an Integrated Discovery Program carried out in partnership with the Ontario Brain Institute (OBI), has just released critical data on childhood hemiplegic CP, a condition characterized by a weakness on one side of the body. In Canada, three in every 1,000 children are diagnosed with CP each year. Currently, there are about 47,500 people living with CP and hemiplegic CP affects 38 per cent of people with the disorder.
The Hemi-NET Clinical Database, which focuses on children and youth aged 2-18 with a confirmed diagnosis of hemiplegic CP, contains data on more than 300 young people from across Ontario. Clinician scientists from nine study sites across the province, along with the children and patients, contributed clinical assessments and test results stemming from CPNET research projects to the database.
“Research and innovation alongside collaboration are vital to the success of Ontario’s healthcare sector,” said Jill Dunlop, Minister of Colleges and Universities. “OBI’s release of this new data set reaffirms its role as a scientific leader. With clinicians and patient partners working together across the province, Ontario is transforming the way in which we study, diagnose, and treat neurological conditions.”
The data are organized around the following platforms: • Clinical Risk Factors: clinically relevant neonatal and obstetric risk factors from obstetrical and neonatal health charts, • Genomics: saliva samples acquired from the index child and biological parent(s) with DNA extracted, • Neuroimaging: standardized coding of clinically acquired neuroimaging, and • Neurodevelopmental: standardized assessments of gross motor, fine motor, language, cognitive, behavioural function, and self-reported quality of life.
The standardized, cleaned, and curated data, now shareable on Brain-CODE, OBI’s state-of-theart neuroinformatics platform, allow maximum utility for analysis across disease and across platform – all while protecting the identity of participating individuals.
As an Integrated Discovery Program carried out in partnership with OBI, CP-NET works with researchers, clinicians, and people impacted by cerebral palsy to accelerate the development of neuroscience discoveries. Dr. Darcy Fehlings, senior clinician scientist at Holland Bloorview Kids Rehabilitation Hospital and principal investigator at CPNET, who led the OBI-funded research that contributed to improved understanding of the genetic basis of hemiplegic CP, said that these newly released data provides an opportunity for researchers from around the world to further explore new and better ways to prevent, treat, and manage symptoms in children with hemiplegic CP.
“This data set shows that when we embed common data elements, such as health care markers in the care delivery process, standardized assessments of cognitive and behavioural function, and self-reported quality of life, scientists and clinicians working in completely separate labs and hospitals can come together to improve care and drive change for individuals with CP and their families.”
“In fact,” Dr. Fehlings continued, “members of the CP-NET clinical team – located in different parts of Ontario – are already using these data to improve early care of children with CP such as promoting pediatric CP hip surveillance.”
Dr. Tom Mikkelsen, President and Scientific Director of the Ontario Brain Institute, said: “The creation and release of this data set, OBI’s sixth clinical release in an 18-month period, demonstrates clear progress in better understanding treatment options for conditions like cerebral palsy and underscores the benefits of the team science approach, which champions collective success over the success of any one individual.”
OBI and CP-NET invite all interested researchers to use this dataset in their own research to advance our collective understanding of CP and enhance care for those impacted by it. ■ H E quitable cancer care for Black patients, medical schools’ responses to anti-Black racism, mental health of Black youth and gaslighting in academic medicine are some of the topics in two anti-Black racism in health care issues of CMAJ (Canadian Medical Association Journal) published October 24 and October 31, 2022.
Anti-Black racism is a threat to public and population health in Canada. Scholars and researchers in social and health sciences have studied and documented the effects of anti-Black racism and its impact on health inequities in Canada for decades, yet systemic racism has undermined the publication of this work. As a result of years of advocacy by the Black Health Education Collaborative (BHEC), CMAJ is publishing two special issues on the health of Black people in Canada and anti-Black racism in health care, to focus attention on this important topic and to provide a foundation for future content.
“It is incumbent upon health care practitioners to engage in anti-racist practices to improve the health experiences and outcomes for Black people. I believe the articles in the two-part special issue will provide guidance, direction and insights on the steps to take to create better health outcomes for Black people in Canada,” says Dr. OmiSoore Dryden, co-lead of the national Black Health Education Collaborative and associate professor, James R. Johnston Endowed Chair, Black Canadian Studies, Faculty of Medicine, Dalhousie University.
New dataset to enhance care for children with cerebral palsy
TTHE HEMI-NET CLINICAL DATABASE, WHICH FOCUSES ON CHILDREN AND YOUTH AGED 2-18 WITH A CONFIRMED DIAGNOSIS OF HEMIPLEGIC CP, CONTAINS DATA ON MORE THAN 300 YOUNG PEOPLE FROM ACROSS ONTARIO. Special anti-Black racism issues of CMAJ focus on patient health and health professionals The articles in the special issues follow 2 broad themes: anti-Black racism and patient health, and anti-Black racism in the health system that affects trainees and medical professionals. “For the last few decades, the Black health community has been involved in advocacy to shed light on the effects of anti-Black racism and systemic inequities that have underpinned poorer health outcomes for Black communities,” says Dr. Mojola Omole, a surgical oncologist in Ontario and journalist who also co-hosts CMAJ Podcast. “The inaugural BHEC and CMAJ special issue is the first step for all health professionals to move beyond treating the disease and treat the whole person. After all, health is not the only goal, but our patients’ well-being.” ■ H
NEWS AI cell analytics app could supercharge biotechnology research
By Jessica Purver
Transformative technology developed by Vancouver Coastal Health Research Institute (VCHRI) researcher Dr. Mads Daugaard at the Vancouver Prostate Centre (VPC) is putting cell analytics into the hands of scientists around the globe. The artificial intelligence (AI)-driven smartphone app SnapCyte produces data used in cell growth medical research at a fraction of the cost and in a more timely manner than current technology.
“We developed SnapCyte based on a need for affordable, basic cell analytics that can be accessed by any scientist working in a cell culture or biotechnology laboratory,” says Daugaard. “This app makes commercially available affordable, high-performance laboratory technology that can be conveniently accessed on a smartphone.”
Used in the analysis of cancer cells and other diseases at a microscopic scale, the first-of-its-kind SnapCyte app could supercharge the development of novel, personalized medical treatments.
“The app returns precision data results within five minutes,” he says. “With the former technology, this process would normally take 45 minutes to an hour with the most high-end live-cell imaging and analysis platforms, or 24 hours with colorimetric assays.”
SnapCyte also simplifies workflows without compromising accuracy. Unlike current technology that uses duplicate samples of a cell culture with a medium/serum solution, SnapCyte can be used on experiments in the plates where the cell culture is grown. It also collects and displays cumulative cell data in growth curves to aid with monitoring cell development over time, which can be easily shared among researchers.
“All you have to do is take the plate with the cell culture out of an incubator for a minute and put it under a microscope where you can then snap a picture of it with your smartphone,” says Daugaard.
Scientists can also monitor cell growth in the same well or stack of plates continuously, and add nucleic acids or other substances – in a process called transfection – when optimal.
“This platform can be very helpful in drug screening,” says Daugaard. “When comparing multiple drug candidates, SnapCyte can very accurately and quickly assess how each drug acts on cancer or other cells to identify the most effective treatment.”
BRINGING CELL ANALYTICS WITHIN REACH OF LABS ACROSS THE GLOBE
At a few hundred dollars per year, the app’s affordability makes the platform an accessible option for laboratories that are unable to buy costly cell analytics equipment.
“Many laboratories do not have the funding to purchase new $25,000 to $30,000 machines, or the budget to support the ongoing investment of thousands of dollars per month required to use the equipment,” says Daugaard.
SnapCyte’s cloud-based platform allows users to not only accurately measure their collective cell culture data in minutes – the big data it gathers could also provide important insights to further advance scientific research.
SnapCyte’s AI algorithm is continuously learning from the data received from its users, says Daugaard. While the data is protected, the app’s efficacy will improve over time as it learns from and shares insights with the research community.
“It is time to democratize research, and that is what we are doing here,” says Daugaard. “We are putting something on the market for a fraction of the cost that will perform at least as good as – or even better than – many other devices currently available.”
The SnapCyte App is currently undergoing final beta testing and is expected to launch worldwide beginning of 2023.
(L-R) Dr. Mads Daugaard with SnapCyte Solutions Inc. co-founders Negin Farivar and VCHRI researcher Dr. Nader Al Nakouzi.
VANCOUVER COASTAL HEALTH RESEARCH INSTITUTE
Vancouver Coastal Health Research Institute (VCHRI) is one of the top funded research institutes in Canada, translating health research into practice. The breadth and scope of research at VCHRI have long-lasting impacts on patient care and health care systems in British Columbia and around the world. With more than 2,400 personnel engaged in research across 15 world renowned research centres and programs, VCHRI’s research activities range from laboratory-based research to gain understanding about the human body and health conditions, to clinical research focused on evaluating new ways to provide patient care. Across all of its centres, VCHRI is creating healthier lives through discovery. www.vchri.ca
VANCOUVER PROSTATE CENTRE
The Vancouver Prostate Centre (VPC) has a track record of success that has earned it a reputation as one of the world’s most respected cancer facilities. It is a National Centre of Excellence and a designated Centre of Excellence for Commercialization and Research. The combination of a large patient clinic and clinical trials facility, together with a world-class translational research program under the same roof, make the VPC the largest program of its kind in Canada. VPC is hosted by Vancouver Coastal Health Research Institute and the University of British Columbia. www.prostatecentre.com ■ H
NEWS New software for tracking Parkinson’s disease symptoms wins Canada-wide competition
By Margaret Polanyi
ACanadian startup that has created a digital assessment tool for monitoring Parkinson’s disease symptoms has won the 2022 AGE-WELL National Impact Challenge.
In making the winning pitch, Bronwyn Bridges, Co-Founder and CEO of PragmaClin, said the ultimate goal is for people living with Parkinson’s to get help faster with more accurate results.
The idea came when Bridges was a master’s student, working with Gord Genge, who lives with Parkinson’s. “He came to me with a brilliant idea to help others, and that progressed into a full software which we’ve developed called PRIMS.”
The PRIMS system monitors motor and non-motor symptoms of Parkinson’s. How it works: First, the person living with Parkinson’s completes an at-home survey to determine their daily living skills. Next, at the doctor’s office, the individual stands in front of a computer equipped with body-tracking cameras, and completes a series of tasks. The PRIMS software then assigns a score, based on real-time data, on an internationally recognized Parkinson’s scale.
“Data from the software will help clinicians assess and monitor a patient’s condition and adjust their medications or physical therapy, if needed,” Bridges said. For people living with Parkinson’s, PRIMS “helps them keep track of those symptoms they are having, from their own personal portal.”
Bridges said the $20,000 cash prize from winning the AGE-WELL National Impact Challenge will go towards the next phase of validation trials, patent filing, team expansion and more. The hope is to fully commercialize and enter the market by 2024.
Five finalists took part in yesterday’s pitch event, describing how their technology-based solution could positively impact older Canadians or their caregivers.
The runner-up prize went to Singular Hearing, which uses artificial intelligence to create new kinds of hearing assistance that help people stay connected. The company makes HeardThat, a smartphone app for those who have trouble hearing speech in background noise, such as restaurants. Singular Hearing won a cash prize of $5,000.
Care2Talk Technologies received the People’s Choice Award for its accessible and intuitive communication and health platform designed to revolutionize the way seniors connect with their healthcare providers and loved ones.
One of the most exciting startup competitions in Canada, the AGEWELL National Impact Challenge recognizes and supports top startups in the country’s growing AgeTech sector. This year’s competition was held as part of the AGE-WELL Annual Conference in Regina, Saskatchewan.
AGE-WELL thanks the generous sponsors of the 2022 AGE-WELL National Impact Challenge: key sponsor, the Ontario Brain Institute (OBI), and Bereskin & Parr. ■ H
Margaret Polanyi is Senior Manager, Communications at AGE-WELL, a federally funded Network of Centres of Excellence. The pan-Canadian network brings together researchers, older adults, caregivers, partner organizations and future leaders to accelerate the delivery of technologybased solutions for healthy aging. https://agewell-nce.ca/
Partnership Conference
Connect with Digital Health Leaders and Industry Experts
Join us Nov. 15-16 for the 2022 Infoway Partnership Conference to hear from leading voices in Canadian health care, including Dr. Alika Lafontaine and Dr. Chika Stacy Oriuwa.
Register now to secure your spot: infoway-inforoute.ca/partnership
Dr. Alika Lafontaine
President, Canadian Medical Association
Dr. Chika Stacy Oriuwa
Physician and Time magazine’s “2021 Next Generational Leaders”
When patients lead, research is relevant
By Ana Gajic
Next-level patient empowerment: that’s how Dr. Andrea Tricco describes an initiative that encourages Canadians to submit questions that will guide scientific research.
Dr. Tricco, the director of the Knowledge Synthesis Team in the Knowledge Translation Program at Unity Health Toronto, leads a federal initiative called the Strategy for Patient-Oriented Research (SPOR) Evidence Alliance. The team recently received a $2.6-million top-up from the Canadian Institutes for Health Research (CIHR) for this work, which promotes evidence-informed health policy and practice changes.
Now, they’re reaching out across Canada to gather ideas for research that will generate health practice and policy impact. The 20 people whose projects are selected will become embedded in their research and lead from their lived experience, alongside researcher co-leads. We asked Dr. Tricco more about this initiative, the unique model it offers for patient-oriented research, and its impact.
What is the importance of patient-oriented and patient-engaged research?
Dr. Andrea Tricco: Patient and public partners have lived experience, and they are the ones who are interacting with our health system every day. They have a lot of knowledge about the barriers and challenges of our health system, sometimes even more than providers and other decision makers working in the system. They play an all-important role in our research. They provide us with the health-care consumer perspective, provide opportunities to work with the community, help shape our research questions, make sure our research is relevant and impactful, and they ensure our findings are useful for important health system decisions. Patient and public partners make our research better.
We have a recent example where there was a question from a public health body. When we discussed it with the patient and public partners, they felt that the question wasn’t quite right. They suggested a completely different approach. This is a good example of where the policy decision maker didn’t have the lived experience expertise required to understand the underlying issues. This also shows us why it’s so important to get feedback from patients and the public early on in the research process.
What is the main focus of the SPOR Evidence Alliance?
Dr. Tricco: Different health decision makers, such as policy decision makers, health-care providers, as well as patient and public partners submit research questions that will help inform a decision they’re trying to make. The SPOR Evidence Alliance works alongside these decision-makers to co-create research projects that will answer their research questions. We are mandated by CIHR to answer their questions using knowledge synthesis, knowledge translation or clinical practice guideline methods.
Over the last six years we’ve completed more than 125 projects and we’ve worked with 45 different decision-making organizations across Canada and abroad. That includes the mechanism where patients can submit topics and we conduct patient co-led queries for the topics that patient and public partners suggest. More information on our initiative can be found in our recent series of papers published in the Facets Journal.
The SPOR Evidence Alliance has investigators across the country, led out of the Knowledge Translation Program at Unity Health. Why is Unity Health well positioned to be the centre of this work?
Dr. Andrea Tricco
Dr. Tricco: We have a long history working with patient and public partners and also with policy decision makers, health-care providers, and other decision makers in the health system. It takes years to build these relationships. Having them in place prior to beginning this initiative was a facilitator to our success. We also have experience leading Canadian initiatives so we have been able to take learnings from other initiatives and apply them to this.
In the first round of this funding, your team ran three patient and public partner co-led pilot projects. How were the three projects that were prompted by patient questions selected?
Dr. Tricco: Over one year, patients submitted 11 topics. These topics were prioritized by a panel of 25 individuals with diverse experience as policy-makers, health-care providers, trainees, researchers, and patient and public partners.
From the 11, we selected three topics that were deemed in scope of our initiative, unique in order to reduce research waste, and highly impactful. The projects were then co-led by research teams alongside the person with lived experience who submitted the topic. We are now scaling this up. Since July, we have received almost 50 topics that will be prioritized and result in 20 additional projects.
Why is this approach unique?
Dr. Tricco: Patient and public partners are truly involved at every level. They are involved in the governance of our initiative through various committees, and then we have patients and the public engaged in every project. At the highest level of empowerment, patient and public partners are submitting the topics and they co-lead projects from start to finish.
What has the impact of patient-created and co-led projects been so far and what do you hope the impact will be for the next set of projects?
Dr. Tricco: We’re getting to very relevant questions to inform health systems change.
Patient partners co-lead with their lived experience. They provide unique content expertise as those frequently using and navigating our health system that a researcher doesn’t necessarily have. The impact of this is to reduce research waste, answer the most impactful and important questions, and develop evidence that can be used for everyone in the health system.
The SPOR Evidence Alliance is currently collecting research questions from the public and patient partners. To submit a question, please visit this page on the SPOR Evidence Alliance website. ■ H
NEWS Supporting Indigenous cancer patients
Without truth, there can be no reconciliation.
That’s one of the messages Dionne Nolan is hoping to spread this National Day of Truth and Reconciliation.
Nolan is the Indigenous navigator and works with cancer patients and their families. The main focus of her role includes supporting Indigenous patients and families by going to appointments, explaining medical information, making home visits, finding spiritual care and advocating on their behalf.
“Mino-pimatisiwin means ‘the good life’ in Anishinaabemowin. It is holistic and balanced in the four realms of human experience. Physical, emotional/social, spiritual and intellectual/mental,” Nolan explains. “We are whole health practitioners. We offer what mainstream health care cannot.”
Nolan is Anishinaabe and says her love for her culture is one of the reasons why she wanted to help her community.
“I’ve always been a bridge builder, a good communicator, an empathic listener and I strive to develop healthy relationships. Following my heart lead me to be a helper. My love for my culture and my community keeps me going, even on hard days.”
For many Sept. 30 will be a hard day. While National Day for Truth and Reconciliation aims to honour the children who never returned home and survivors of residential schools, Nolan feels healing will only occur once Indigenous Peoples can share their whole truth.
“Every single Indigenous person alive today is a survivor or related to a survivor of these so called schools, or the Sixties Scoop or the Millennium Scoop. Every single Indigenous person alive today carries that trauma within their blood. That pain is burned into our hearts. The truth is anger is pain and grief is pain.”
That’s why she says it’s so important for Indigenous Peoples to get the opportunity to speak up in an honest way, without judgement or fear, and for Canadians from coast to coast to listen.
“Truth will free those more than 10,000, and the number keeps growing, children buried at residential schools. Truth telling will free us to move forward, and to move forward we need to tell the whole truth about what is going on. This isn’t in the past, mind you, this is right now. We are a whole group of people whose language, culture and identity the church and government tried to erase.”
To help make Kingston Health Sciences Centre (KHSC) a more welcoming and inclusive place, an Inclusion Steering Council was formed in 2021.
Nolan is a member of the council which aims to improve diversity, equity, access to opportunities, recognition and celebration of all people, regardless of who they are or where they’re coming from.
KHSC also has a goal to identify and address gaps in health care, to make sure everyone who turns to the organization for care will be treated with compassion, respect and dignity.
Nolan has high hopes her role as a navigator will one day turn into an Indigenous wellness department. Not only at KHSC, but also at health-care organizations across the country.
“We need spiritual care practitioners who are Indigenous. We need an entire department that focusses on relationships with Indigenous communities, especially the urban Indigenous community of Katarokwi. We need a department to oversee all things Indigenous. That is my dream.”
Until then, she will continue to help the patients and families she serves at KHSC find their mino-pimatisiwin.
“Every day I go home knowing I made someone’s day a little better and every day I learn to be better than I was the day before. I am grateful for each new day that I get to be a helper. It is through giving that I feel we can truly receive.” ■ H
KHSC sits on the ancestral lands of the Anishinaabe and Haudenosaunee and serves the community of Tyendinaga and the local Katarokwi community, as well as several northern Indigenous communities along the coast of James Bay such as Moose Factory, Attawapiskat and Kashechewan through our long-standing partnership with the Weeneebayko Area Health Authority.
NEWS Can patient data improve hospital care?
The physician-researchers behind GEMINI set out to find out
By Ana Gajic
Every test, vital sign measurement and medication prescribed is a data point on a patient’s care journey in the hospital. But how can we use that data to measure and improve the quality of patient care within and across different institutions, when hospitals don’t use the same data systems to generate and store information?
More than seven years ago, two General Internal Medicine physicians and researchers at St. Michael’s Hospital, Dr. Fahad Razak and Dr. Amol Verma, set out to answer this question and bridge the gaps that exist in hospital data collection. They wanted to understand the care provided on medical wards and use data to improve it.
Their goals set into motion GEMINI, a program that collects, formats, standardizes and analyzes clinical data from hospitals to improve how health care is delivered. Since its inception, GEMINI has grown from a pilot project anchored at Unity Health Toronto and just a few other Toronto area hospitals to the largest network of its kind in Canada, covering 33 hospitals and 60 per cent of the province.
During the pandemic, GEMINI continued to lead the way in hospital data collection and analysis, helping quickly bring to light information about Canadian hospital care that no one else in the country had access to. We spoke to the Dr. Razak to learn about GEMINI’s recent work and what’s on the horizon.
How has GEMINI progressed since its inception?
The main barrier we faced when we started this program was that the huge trove of data that’s generated as part of clinical care was not available to be used to understand the kind of care that we’re providing. The lab tests we order, the medications we prescribe, the vital signs that are measured are all data points that are collected, but where in the hospital are they, and how do you get access to them and extract them?
The core mission of GEMINI was to get all of that information out of complex hospital systems, and to bring it into a central dataset that can be used for analysis for reporting for quality improvement.
In Canada and Ontario, there is no single way that data is stored in hospitals or across hospitals and so every hospital has its own complex backend to store information. Imagine decades upon decades of layered on systems with often incomplete documentation. It has taken a lot of elbow grease to figure out how to transfer data from more than 1 million patient admissions (and counting) containing billions of data points worth of information out and ensure their accuracy. We have accuracy from 97 to 100 per cent now which means this data is ready to use to improve quality of care and for research.
How have the last two years enhanced GEMINI’s purpose?
The evidence we saw from other parts of the world early in the pandemic was that hospitals were one of the highest risk parts of the health system for collapse – places like Italy and New York City come to mind. The question we focused on was what can we do to understand our hospital care capacity and how can we help address similar collapse from occurring here? In Canada, there was no single dataset to look at the hospitals – until GEMINI. With the enhanced concern about hospitals being vulnerable, GEMINI’s role became more important.
A lot of pivotal papers about the Canadian response to the pandemic were produced by GEMINI and that was a really important opportunity for us to use our data rapidly and demonstrate to hospitals why rapid data turnaround was important.
For example, the first and largest study of patients hospitalized with COVID in Canada was a GEMINI paper. The first paper in Canada to look at hospitalized patients with disabilities was also GEMINI-led. As was the first paper to look at Canadian shortages in one of the few life sustaining therapies for COVID-19 Tocilizumab, which also proposed an ethical allocation framework.
Quality improvement is one of the pillars of GEMINI’s work. How does the data collection and analysis lead to improvements in care?
GEMINI has worked towards a learning health system, which is the idea that there is a continuous circle of feedback that happens between those who are providing care, the data that’s generated as part of providing care and researchers and quality improvement experts who are very quickly analyzing and feeding the information back to the providers so that you get this circle of improvement happening.
It’s about having insight on everything that we do. Prior to GEMINI, if you were a physician who worked in hospitals, there was a reasonable chance that in your entire career you may have never received any data about the care you provide. This is a very complex environment that we practice in. We can’t expect anyone to improve what they’re doing without having any information about it. A circle of improvement is impossible without data.
How does Artificial Intelligence (AI) integrate with the work that GEMINI does?
We have really started to move the needle with patient safety. Some of the most important things that happen with patient safety in hospital are things that are preventable or addressable if you were able to identify them, and identify where they’re occurring more frequently.
One example is blood clots: Patients in hospital have a higher risk of clots because when they’re sick and in bed, as the blood is not circulating as much and is more inflamed in some ways. A blood clot in the leg (a deep vein thrombosis) can break off and move to the lungs – causing a life threatening pulmonary embolism. This is an important patient safety event we can prevent but we have very little information about the frequency that it occurs in hospital. GEMINI developed an algorithm that reads the text of radiology reports for patients across the province to identify when these clots occur and we can now see where and when there are higher rates of clotting and physicians can intervene.
What are some of challenges that exist in the space GEMINI occupies?
One challenge is cultural: There aren’t a lot of incentives for hospitals to share resources or data with one another. Before GEMINI there wasn’t any example in the country of large network of hospitals coming together to share such enormous data repositories – that requires a lot of trust.
It wasn’t a coincidence that Unity Health took the lead on this as the site to do it. We are known to be a team player as an institution. We are known to be world class with our data and analytics. We recognized as a group that we would not try to make all of the leadership and value add anchored to Unity because we wanted people to share this across the system. This is a win for the people of Ontario. That’s been critical to our growth because if hospitals try and compete with each other, there’s never going to be an incentive for them to share. We’ve demonstrated that by sharing we can collectively do more.
How does equity and inclusion play a role in the work GEMINI is doing?
We want to demonstrate that even though electronic data has some limitations, we can take the existing information we have, and still show important gradients across equity parameters, whether it’s the neighborhood you live in, whether it’s your age, whether it’s disability status. We’re trying to use every advanced analytic method we have to pull out as much as we can around the equity characteristics and demographic characteristics of patients.
We also think we’re an important group to demonstrate that even at the very cutting edge of what you can do with electronic data, there’s certain things you cannot recreate without directly asking people. You cannot understand their home situation, whether they have trouble getting groceries, whether they’re on the verge of being evicted.
We want to show you can do a lot, but we also want to show where the real gaps are to help make the case that we should gather this information systematically for patients because it’s important to health.
What are some exciting areas of work on the horizon?
A major thrust is going to be helping physicians to understand how to use this information, make concrete targets for improving quality of care and then helping them track over time whether they achieve those targets by using GEMINI data.
These kinds of deep clinical holdings are valuable in delivering improved patient care. We have a major partnership with the Vector Institute and a lot of our work over the next few years will be taking the best AI scientists in the world, giving them access to GEMINI and seeing what they can predict, analyze and provide for hospitals.
GEMINI has also become one of the most widely used data sets for students to learn how to analyze health data. In the next few years, we will become probably one of the largest groups in the country supporting the next generation of scientists and clinicians to understand the role of health data and learn how to use it.
What would you like people to know about the work you do?
We are we are holders of deeply sensitive information about patients. That information can be used with the highest standards of privacy protection to improve the care of individuals, and to ensure the sustainability of our health system.
This is a partnership with the public and with the health system to use individuals’ data – which is deeply sacred – to help improve their care but also in a shared way to improve the system. We want people to understand that that can be done in a very safe way and that all of us in Ontario and people in Canada can benefit greatly from it. ■ H
Ana Gajic is a senior communications advisor at Unity Health Toronto. Dr. Fahad Razak and Dr. Amol Verma are pictured here at St. Michael’s Hospital. Please note this photo was taken before the COVID-19 pandemic.
