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Ending Canada’s HIV Epidemic One Diagnosis at a Time
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By Kyla Trkulja
It is estimated that about 70,000 Canadians are living with Human Immunodefi ciency Virus (HIV).1 Th ankfully, advances in treatment, increased awareness about preventative measures, and eff orts to combat stigma have both improved the prognosis of people with the virus and slowed its transmission across Canada. Th e goal of bringing an end to this virus as a widespread threat is possible by the year 2030—although we can get there sooner if we increase access to HIV testing and connect people to care.2
A major barrier to this is reaching the 13% of those living with HIV who do not know that they are infected.3 While this may seem like a minority of the population, lack of diagnosis is a key driver of the HIV epidemic. Since these individuals are not receiving treatment, they can still transmit the virus through unprotected sex and sharing of drug injection equipment. Increasing access to diagnostic testing is a major strategy in Canada’s plan to end HIV. Once diagnosed, individuals can get access to life-saving antiretroviral therapy, which allows patients to live long, healthy lives.3 What’s even more incredible is that individuals on antiviral medications who achieve viral suppression, when HIV can no longer be detected in their blood, are no longer infectious. Th is means they cannot transmit the virus to others, making this a huge public health advancement in ending the spread of HIV.
Dr. Sean Rourke, a clinical neuropsychologist and scientist with the MAP Centre of Urban Health Solutions at St. Michael’s Hospital and Unity Health Toronto, has played an important role in Canada’s eff orts to increase access to HIV testing and ensuring those with the virus can live normal lives. Aft er completing his PhD in clinical neuropsychology at the University of California San Diego, he was given the opportunity to open an HIV neurobehavioural clinic in Toronto at St. Michael’s Hospital—the fi rst neuropsychology clinic in Canada for HIV-related cognitive concerns.
“[Th e brain] is just like any other organ in the body; it’s aff ected by HIV mainly because of infl ammatory processes,” Dr. Rourke explains. As such, his clinic aims to better understand why some patients with HIV develop a mild brain injury while others don’t, whether this injury is due to HIV or other conditions, how this injury aff ects wellbeing and everyday functioning, and how to treat it. Th is clinic has tested thousands of people and both improved the quality of life of individuals with HIV and increased knowledge on how HIV aff ects the brain. Dr. Rourke also strives to increase accessibility to HIV testing by fi lling in gaps in the health system across the country. He analyzes the needs of communities throughout Canada and determines how they can best be addressed. Dr. Rourke’s goal is to reach individuals who are undiagnosed so they can “know their status” and make decisions about going for treatment. He achieves this by increasing HIV awareness, addressing the barriers that can cause stigma, and connecting individuals to free testing and treatment.
“I’m trying to bridge the health, public health, and community sectors together,” Dr. Rourke says. “We can end HIV in Canada—we have everything we need. It’s just that we’re not doing the things that we need to do to get there.”
Dr. Rourke led eff orts in getting Canada’s fi rst self-test for HIV approved, and launched the “I’m Ready to Know” research program (www.readytoknow.ca) featuring Canada’s Chief Public Health Offi cer, Dr. Th eresa Tam, on June 2nd, 2021. Individuals across Canada can now download the ‘I’m Ready, Test’ app that gives them the ability to order free HIV self-test kits and get connected to care anywhere in Canada. Th ey can also book an appointment with a peer navigator
DR. SEAN B. ROURKE
PhD, FCAHS, Professor in the Department of Psychiatry at the University of Toronto
Photo Credit: Dr. Rourke
online to support them with the testing and linkages to care. In the fi rst nine months since launching, over 5,000 HIV self-test kits have been accessed across the country.
In order to reach populations that may not have smartphones or a permanent home address, Dr. Rourke is also launching a new program called ‘Our Healthbox’, which allows individuals to access free HIV self-tests and harm-reduction supplies including clean needles and naloxone through dispensing machines in the community. Th e goal of these machines is to provide low-barrier access to a collection of products that are urgently needed while encouraging people to take care of themselves, and reduce harm without the risk of shame or stigma. Th e ‘Our Healthbox’ machines will be all over the country starting in the Summer of 2022, including remote and First Nations communities, so people can get, as Dr. Rourke describes, “what they need for their health in ways that works for them where they live.”
While the dispensing machines will improve access to HIV self-tests and minimize the discomfort of asking for a test from a doctor, Dr. Rourke is also working to combat the stigma that serves as a barrier to HIV testing and access to health services. He is involved in a program called “Th e Positive Eff ect” (www. positiveeff ect.org), a fact-based, lived experience movement powered by people living with HIV and the communities that support them. Th eir work is focusing on ending HIV stigma once and for all by teaching people about the misconceptions and misinformation about HIV to reduce fear. “Most of the time, people who stigmatize simply do not have the right information—they need to know more about HIV and have the right language to engage respectfully in the conversation” Dr. Rourke explains. “If everybody did that a little bit more, the world would be a lot better.” He remains optimistic that with the right tools, individuals and society can learn to broaden their mindsets. Th is, combined with increased access to testing and treatment, is having a direct impact on ending the HIV epidemic in this lifetime.
References
1. Public Health Agency of Canada. Estimates of HIV Incidence,
Prevalence and Canada’s Progress on Meeting Th e 90-90-90 HIV
Targets. 2020 Dec. https://www.canada.ca/content/dam/hc-sc/ documents/services/publications/diseases-conditions/summary-estimates-hiv-incidence-prevalence-canadas-progress-90-90-90/ national-hiv-estimates-report-2018-en.pdf 2. Lima VD, Brumme ZL, Brumme C, et al. Th e Impact of Treatment as Prevention on the HIV Epidemic in British Columbia, Canada.
Curr HIV/AIDS Rep. 2020 Apr;17(2):77-87. doi: 10.1007/s11904020-00482-6. 3. Malekinejad M, Blodgett J, Horvath H, et al. Change in Condom
Use in Populations Newly Aware of HIV Diagnosis in the United
States and Canada: A Systematic Review and Meta-Analysis. AIDS
Behav. 2021 Jun;25(6):1839-1855. doi: 10.1007/s10461-020-03113-8.
Dr. Samantha Anthony, first Social Worker Health Clinician-Scientist in Canada:
By Iciar Iturmendi-Sabater
The quality of healthcare in Canada is better than ever, and Canadians have never been healthier.1 Over the last decade, the number of organ donors in Canada has increased by 59%, further enhancing health and saving lives.2 Among the factors contributing to these improvements is the increasing emphasis on patient engagement: the collaboration between patients, family members, and informal caregivers with healthcare professionals to improve healthcare quality.
Through patient engagement, Dr. Samantha Anthony leads a clinical research program focused on promoting psychosocial adaptation and quality of life in children who have undergone solid organ transplantation. She is a Social Worker within the Transplant and Regenerative Medicine Centre and a Health ClinicianScientist at The Hospital for Sick Children (SickKids). Additionally, Dr. Anthony is an Associate Professor (status only) at the Factor-Inwentash Faculty of Social Work and is cross-appointed as an Associate Member with the Institute of Medical Science (IMS) at the University of Toronto (UofT).
As a Health Clinician-Scientist in Social Work, Dr. Anthony is the first professional to hold this unique role in Canada. This position was created as a result of an innovative partnership between SickKids and the Faculty of Social Work at UofT. “I am always advocating for these positions because the clinical scientist role facilitates the bi-directional transfer of knowledge between clinical practice and research, which is a critical gap to bridge,” Dr. Anthony shares. Patient engagement is a way to bridge that gap.
When asked how patient perspectives have been integrated into her research, Dr. Anthony explains that when she started her career as a Social Worker over 20 years ago, survival statistics were viewed as the primary endpoints for considering the efficacy of solid organ transplants. However, a paradigm shift began where quality of life emerged as an essential outcome that deserved integral consideration within transplantation.
“As a clinician, I realized we needed to explore the lived experiences of transplant recipients, assess their post-transplant adaptation, and identify risk factors that affect their psychosocial wellbeing,” Dr. Anthony explains. In fact, it was her role as a Social Worker within the SickKids Transplant and Regenerative Medicine Centre that motivated Dr. Anthony to pursue a PhD within the IMS. Today, we know that the effectiveness of medical interventions is not predicted solely by objective medical measures, but also by patient-reported outcome measures (PROMs). PROMs capture the experiences of patients from a unique, subjective stance, which objective medical measures cannot assess on their own.2
Dr. Anthony expresses that “traditionally, children’s lives were often understood from the perspectives of parents. But over time, there has been increasing awareness that we must provide children the opportunity to speak for themselves. [In order] to really understand children’s needs, we must listen to their views about health and well-being.” To achieve this, Dr. Anthony’s team is currently working on developing an electronic PROM platform called Voxe that will help to collect information about the experiences of pediatric transplant recipients.3
Dr. Anthony notes that many young patients want the opportunity to engage with others in the transplant community. “One of the things within solid organ transplantation is that it encompasses a very small patient population compared to other chronic disease populations. Many of the children have not met someone else who has had a transplant.” To address this, Dr. Anthony and her team are testing the effectiveness of a novel peer-to-peer
Children express what life is like after their transplant through art.
DR. SAMANTHA ANTHONY
PhD, MSW, RSW Social Worker within the Transplant and Regenerative Medicine Centre and a Health Clinician-Scientist at SickKids | Associate Professor in the FactorInwentash Faculty of Social Work at the University of Toronto | Assistant Professor Institute of Medical Science
Photo Credit: SickKids
mentorship program: the iPeer2Peer Support Mentorship Program in Pediatric Solid Organ Transplantation.4 Dr. Anthony shares, “We conducted mentorship training over three days with young adult transplant recipients across Canada. Th e three days were remarkable because we could see the mentors bonding and fi nding it very therapeutic to connect over shared experiences.” She adds that especially now, when transplant recipients feel the isolation of the COVID-19 pandemic on top of the unique experience of being a transplant patient, it is timely to off er the opportunity to connect patients and their families with others.
Within the fi eld of patient engagement, Dr. Anthony’s clinical and research work also aims to acknowledge the power imbalance, racism, and lack of control that has shaped the skepticism and mistrust towards research and healthcare systems that many marginalized communities experience. Dr. Anthony’s team is exploring the organ donation and transplant experiences of Chinese Canadians (supported by the the Kidney Foundation of Canada) and Indigenous patients, families and communities in Canada (supported by a Canadian Institutes of Health Research Project Grant and the Leong Centre for Healthy Children Catalyst Grant). Dr. Anthony recognizes “it is critical that we co-create culturally appropriate research designs and methods while knowing that sustainable engagement takes time and eff ort. It is our responsibility to question preconceived notions of research and take part in both self-refl ection and fostering new dialogue.”
By supporting the role of ethnoculturallyminded Clinician-Scientists like Dr. Anthony, patient engagement practices can promote more meaningful interventions, outcomes, and an inclusive healthcare system. Dr. Anthony expresses excitement that “in recent years, we have seen disciplines beyond medicine establish these clinician-scientist roles, which is wonderful. [Th ese disciplines include] nursing, rehabilitation sciences, psychology, and social work.” She encourages young clinicians and scientists to be creative when thinking about how to bridge the gap between research and clinical care through eff orts to foster patient engagement.
References
1. Dhalla IA, Tepper J. Improving the quality of health care in Canada.
C Can Med Assoc J. 2018 Oct;190(39):E1162. 2. Canadian Institute for Health Information, 2020. Annual Statistics on Organ Replacement in Canada: Dialysis, Transplantation and
Donation, 2010 to 2019. [online] Ottawa: CIHI. 3. Anthony SJ, Stinson H, Lazor T, et al. Patient-reported outcome measures within pediatric solid organ transplantation: A systematic review. Pediatr Transplant. 2019 Sep;23(6):e13518. 4. Anthony SJ, Pol SJ, Lin J, et al. Creation of an electronic patient-reported outcome measure platform Voxe: a mixed methods study protocol in paediatric solid organ transplantation. BMJ Open. 2021
Oct;11(10):e053119. 5. Anthony SJ, Young K, Ghent E, et al. Exploring the potential for online peer support mentorship: Perspectives of pediatric solid organ transplant patients. Pediatr Transplant. 2021 Aug;25(5).
By Bahar Golbon
Currently, one in two Canadians are projected to be diagnosed with cancer in their lifetime.1 Although cancer treatments such as chemotherapy, radiation, and surgery can be curative, they oft en leave individuals with post-therapy impairments, reducing their quality of life.2 Improvements in cancer treatment have dramatically reduced mortality rates since the 1990s.1 Th is has created a large population of cancer survivors who must cope with their impairments for a much longer period of time. Unfortunately, cancer rehabilitation literature is underwhelming, and physiatrists are lacking high quality evidence-based approaches to suffi ciently support these patients.
Dr. David Langelier’s role as a clinicianinvestigator lies at the center of this growing issue. Dr. Langelier is an assistant professor at the University of Toronto’s Institute of Medical Science (IMS), and a physiatrist at the Cancer Rehabilitation and Survivorship Clinic at the Princess Margaret Cancer Centre (PMCC). He also works at the Toronto Rehabilitation Institute.
Dr. Langelier notes, “Th ese survivors now have the unfortunate opportunity to potentially live with these impairments, but we’re not yet equipped to suffi ciently address these impairments as we lack the necessary infrastructure.” Hence, physiatrists are relying on treatment regimens from other injured populations (i.e., spinal cord injury or brain injury) to fi t the needs of oncology patients.
As a physiatrist, Dr. Langelier relies on exercise to treat his patients. Exercise is an eff ective method to improve symptoms, minimize disease progression and recurrence, and potentially even reduce mortality.3 Another benefi t of prescribing exercise as a treatment option is that the patient regains a sense of control over their life and body. Instead of being dictated by their cancer diagnosis, treatment, and post-treatment ailments, patients can re-assert dominance over their disease through the choice to exercise. “If we can say, ‘you can exercise and you have control over potentially changing your course of treatment.’ Th at’s huge.”
Much of the rehabilitation provided in the oncology realm is targeted towards cancer survivors.
Dr. Langelier is also passionate about providing rehabilitation to patients with incurable or metastatic disease. Although they may never be cured of their malignancy, Dr. Langelier highlights the importance of providing a chance for these patients to improve their symptoms such as fatigue, anxiety, pain, and potentially to even delay disease progression. Unfortunately, conventional exercise and rehab programs do not cater to the needs of patients with incurable cancer. Dr. Langelier elaborates, “Th e terminology found in educational materials presented to advanced cancer patients did not relate to them as [the materials] focus on survivors and long-term changes. Patients did not feel these terms and ideas appropriately applied to them. So, we needed to change the content.” Th ese challenges were the ultimate inspiration for the initiation of the Cancer Rehabilitation Exercise for Advanced Cancer (CaRE-AC) program at PMCC, which is based on the original CaRE@Home program.4 It is an eight-week, multidimensional rehabilitation program for patients with advanced cancer. Th is program underwent feasibility testing as a pilot study prior to the COVID-19 pandemic. With the pandemic creating a roadblock to in-person interactions, the study was partially adapted to a virtual setting. Patients attended physical assessments at the hospital and independently performed exercises at home. In this population, it is unlikely to see large improvements, instead the goal is to minimize natural decline in their health status. Th e new virtual aspects proved to be immensely eff ective, with trends supporting stabilization and even improvement in functional ability. Ultimately, the program was deemed to be feasible and highly acceptable among patients. Dr. Langelier and his team are now working towards launching a multicenter study to further test the feasibility of CaRE-AC. Dr. Langelier explains that a constant challenge he faces with this group is the heterogeneity, as
Dr. David Langelier
Assistant Professor, Institute of Medical Science, University of Toronto | Physiatrist, Cancer Rehab and Survivorship Clinic at the Princess Margaret Cancer Centre.
each patient is unique in their journey and the treatments they endure. Th us, the continuation of this project is vital to understand the true scope of CaRE-AC among this vastly unique demographic. Dr. Langelier expresses “I’m extremely happy with the results that we’re seeing! Th e interviews with patients have been so informative and uplift ing, as many patients were feeling they were forgotten about when it came to rehab. We are recognizing that some of these patients have months or years of life left and we could potentially really improve their function and quality of life during this time.”
Dr. Langelier explains that the patients lead their rehabilitation journey and initiate the research process. “Th e questions we need to ask are: what is the patient’s priority and what are they suff ering with the most that we need to overcome?” Additionally, once a study is complete, it is necessary to share the results with the patients to inform them of their contributions and any progress made. If we saw improvements, it could even encourage patients to continue with their exercises.
Cancer rehabilitation is defi nitely moving in the right direction but there is always more work to be done. Dr. Langelier highlighted a gap in the current data, “I think that we haven’t appropriately established the incidence and prevalence of impairments eff ecting cancer patients.” To capture this data accurately, Dr. Langelier suggests developing a provincial or federal cancer rehabilitation database as a longterm goal. Physical therapists, occupational therapists, speech therapists and other rehabilitation experts must be employed to develop appropriate impairment algorithms and codes. With the minimal number of physiatrists in Canada and the growing number of Canadians who will require post-cancer rehabilitation, the need for one such database is dire. Furthermore, the next generation of medical professionals must be trained to expand their reach to the growing population of suff ering patients.
With dedicated researchers like Dr. Langelier tackling the ever-growing epidemic of cancer-related impairments, we can be optimistic about the future of cancer care. As a new addition to the rehab team at PMCC, we eagerly anticipate a multitude of innovative projects in the future from Dr. Langelier and his mentors and collaborators, Drs. Eugene Chang and Jennifer Jones.
References
1. Canadian Cancer Statistics Advisory Committee in collaboration with the Canadian Cancer Society. Canadian Cancer Statistics 2021.
Canadian Cancer Society, Statistics Canada and the Public Health
Agency of Canada 2021; 1–95. 2. Alfano CM, Rowland JH. Recovery issues in cancer survivorship: a new challenge for supportive care. Cancer Journal 2006; 12: 432–43. 3. Silver JK, Baima J, Mayer RS. Impairment-driven cancer rehabilitation: an essential component of quality care and survivorship. A
Cancer Journal for Clinicians 2013; 63: 295–317. 4. Macdonald AM, Chafranskaia A, Lopez CJ, et al. CaRE @ home:
Pilot study of an online multidimensional cancer rehabilitation and exercise program for cancer survivors. Journal of Clinical Medicine 2020; 9: 1–25.
Dr. Emily Ho’s mixed methods approach to youth patient engagement in the clinic and research
By Nayaab Punjani
Occupational therapy aims to help patients improve limb function and adapt to sensorimotor injuries so they may engage in activities that are most meaningful to them, thereby ameliorating the quality of life and autonomy of children experiencing brachial plexus injuries. Th e brachial plexus involves a series of nerves that bridges motor and sensory signals between the cervical spinal cord and upper limbs. Damage to the brachial plexus may occur through injuries during birth, trauma, or autoimmune neurodegeneration.1 Severity of damage to the brachial plexus can determine the degree of loss of active range of motion and recovery. Th ese physical impairments alongside the patient’s needs and goals, determine the impact to which the condition aff ects their life. Th us, it is important to consider the patient’s perspective to conduct meaningful and relevant research in this fi eld.
Th e Canadian Institutes of Health Research (CIHR) defi nes patient engagement as going beyond the common role of a research participant; becoming partners to help design the research protocol and framing fi ndings for policies.2 Dr. Emily Ho is an occupational therapist and research director in the Division of Plastic and Reconstructive Surgery at the Hospital for Sick Children and an assistant professor in the Department of Occupational Science and Occupational Th erapy. Her work highlights the importance of patient engagement among youth with brachial plexus injuries. Starting off as an occupational therapist on a multidisciplinary brachial plexus team, Dr. Ho’s role was to fi nd a way to assess upper extremity functional capacity to help determine the potential for reconstructive surgery. However, no systematic tool existed for this purpose. Alongside a multi-disciplinary team consisting of a physiotherapist, plastic surgeon, and other colleagues, Dr. Ho developed a quantitative measure early in her career. Th e clinical need for reliable and valid outcome measures motivated Dr. Ho to pursue a career in research.
Dr. Ho went on to obtain a Master of Education degree and subsequently a PhD at the University of Toronto. In her PhD thesis, Dr. Ho combined quantitative and qualitative research, an approach more commonly known as mixed methods research, while examining shared decision making among patients and healthcare providers. Dr. Ho explains, “the qualitative piece was where the huge learning happened, and that’s what transforms who I am now. I think whatever journey any student takes, make sure to fi nd a research topic and area that challenges you and a supervisor in a program that stretches you.”
Dr. Ho began to examine shared decision making through interviewing families. “Prior to that I was looking at clinical outcomes, focused on measuring what the children can do. Th en all of a sudden, through engaging in in-depth interviewing, I stopped and listened. I heard their voices and began to understand a bit more about their journey, and that transformed what I now think of in terms of priority setting for research.”
Her unique position as a clinician investigator permits Dr. Ho to incorporate patient engagement in her research and clinical practice. Dr. Ho stresses the importance of having families involved at each step of the research process. In her work, families are involved in developing interview guides and surveys, and providing feedback on new tools. Families are also approached to provide input on whether research outcomes resonate with their lived experiences, which allows for more meaningful research.
Th rough her engagement with youth who have brachial plexus injuries, Dr. Ho highlights the importance of giving youth a chance to be involved in the research process. Th is can take place through leadership roles, being invited to speak on youth panels, and being a part of her advisory group. Being able to give back to others through their experience and peer-to-peer interventions also benefi ts the youth in their own health journey.
Dr. Ho works with youth from newborns to teenagers and recognizes that their needs change as they transition into adulthood. Her current work aims to expand transitional care into adulthood with an emphasis on community care and mental health support, both of which are important to patients. Dr. Ho emphasizes, “if we stay as clinicians and we stay as
DR. EMILY HO
BSc, MEd, PhD, OT Reg. (Ont.) Research Director, Division of Plastic and Reconstructive Surgery, Hospital for Sick Children | Assistant Professor, Department of Occupational Science & Occupational Therapy | Cross appointments: Rehabilitation Sciences Institute; Institute of Medical Science
Photo Credit: Creative Services Studio, The Hospital for Sick Children
researchers within our own little realm (e.g., childhood concerns), and we do not branch out and ask patients, their families, the community what is important, then we are not measuring what is meaningful and we are not producing what is meaningful.” Th rough patient interactions Dr. Ho determined the need for prioritizing transitional care research to enhance quality of life and access to care beyond childhood.
When considering the future of patient engagement in research, Dr. Ho feels it is not suffi cient to only give a voice to patients. Th ere needs to be a standardized process in place for having patients involved in the co-development and co-creation of every step of research, and this eff ort will take time. Having a research body like CIHR involved in funding patient-oriented research is a big step forward. However, having access to patients without clinical connections may not be easy and alternative strategies are needed to connect patients with researchers.
She off ers advice to students aiming to incorporate patient engagement in the research process. She mentions, spending time with patient partners and stakeholders in the fi eld you are interested in will allow you to learn more and network. Having the chance to ask simple open-ended questions like “what do you think about this project,” leaves room for the responder to provide input on any aspect of the research process. Th is approach provides insight on what they prioritize and oft en off ers a unique lens.
Dr. Ho summarizes the steps we need to take to ensure our research is patientoriented. First, we must make research more relevant and meaningful to patients. Second, we need to give patients a chance to have their voice heard and discuss what is important to them. Lastly, it is important to use the correct channels (i.e., social media) to disseminate our fi ndings and reach the target audience.
To conclude, Dr. Ho has some general advice to succeed as a graduate student, “build a strong team to give you mentorship, and then look at the heart of what drives you and follow your passion. For me, my passion is to positively aff ect the lives of those I work with and that drives me to improve and move forward the scientifi c knowledge behind my work.”
References
1. Brachial Plexus Injury [Internet]. [cited 2022 Mar 9]. Available from: https://www.hopkinsmedicine.org/health/conditions-and-diseases/brachial-plexus-injuries 2. Government of Canada CI of HR. Patient engagement - CIHR [Internet]. 2012 [cited 2022 Mar 9]. Available from: https://cihr-irsc. gc.ca/e/45851.html
