The PRO Pipeline
Dorin Manase & Amanda Silva
September 30, 2022
Often referred to as the PRO (Patient Reported Outcomes) team, our goal is to connect researchers and clinicians to their patients through modern and intuitive tech solutions that streamline their research and care.
Over the years we’ve had the pleasure of working on a variety of research and clinical projects where our tools enabled national research initiatives as well as enabling the remote screening and monitoring of patients.
One of the most important foundational projects we began was the RareConnect.org platform. A place where rare disease patients, families and patient organizations can develop online communities and conversations across continents and languages. Over the last five years, RareConnect has grown to over 54,000 members and 1,000 patient organizations and is offered in 13 languages. The success of the RareConnect platform enabled us to expand a research branch called My Studies. In partnership with Children’s Hospital of Eastern Ontario Research Institute, it was built to empower rare disease patients to contribute their symptom information to research studies and is currently being used across Canada for large-scale rare disease research.
The COVID-19 pandemic provided further opportunities for our team to help aid COVID research. We developed the RESPECT (Research Platform to Screen and Protect Healthcare Workers) platform to help screen staff that work within a healthcare, food production, research, or clinical organization. The web application helped collect symptom data from staff and instantly share results of research-grade COVID nasopharyngeal and blood tests.
We also teamed up with the Healthcare Human Factors team at UHN to develop the platform for the STOP-CoV research study investigating the COVID vaccine response in different age groups. This project helped pave the way for digital consent and continues to be the model for future studies.
One of the most important foundational projects we began was the RareConnect.org platform...The success of the RareConnect platform enabled us to expand a research branch called My Studies. In partnership with Children's Hospital of Eastern Ontario Research Institute, it was built to empower rare disease patients to contribute their symptom information to research studies and is currently being used across Canada for large-scale rare disease research.
Dorin, PRO team lead
Beyond the research world, we’ve also had the privilege of working on projects that directly impact clinical care. Princess Margaret At Home (PATH) is an electronic platform for patients to complete standard e-Patient Reported Outcomes (ePROs) from their own devices prior to appointments. This progressive web application enabled the screening and monitoring of patients and is deployed across Princess Margaret and will be expanded to allow reporting capabilities customized per clinic. The ePRO initiative has taken off since and we are now working with many more clinics and departments at UHN, CHEO, and SickKids to offer similar services.
As we look forward, we are just as enthusiastic about the projects we have in the pipeline. The team is building a pediatric PROM (patient-reported outcome measures) platform Voxe, with a kid-centric user interface to make PROM collection easier and more enjoyable for pediatric patients. Cool features we’re building include gif creation and avatar/character building, all while delivering information in easy-to-consume ways via trends and graphs. There will also be a healthcare provider portal that will display and help to summarize the responses submitted by the patient in an easily digestible way, which will improve the ease of how information is incorporated into practice.
Voxe will be integrated with Epic via a middle layer, the ePRO tool the team has built and will continue building out. The main objective for ePRO is to make a simple “connection” tool to help groups integrate their external applications with Epic. This work can eventually be leveraged by other groups at any institution.
Needless to say, it’s been an exciting journey so far and we’re even more excited for what the future will bring!