A Digital Platform to Accelerate Research and Build Community · patients, clinical researchers, and providers, to better understand their relationship with research inter and intra

A Digital Platform to Accelerate Research and Build Community

Dr. Shivani GoyalAssociate DirectorCentre for Global eHealth Innovation, University Health Network

Assistant ProfessorInstitute of Health Policy Management, and Evaluation, University of Toronto

goal

Accelerate research in type 1 diabetes and enable patients to drive future priorities in research, policy, and clinical care.

approach to conceptualization

inspiration

A diabetes registry has the potential to drive our goals of accelerating research and citizen priorities.

T1D Think Tank and Diabetes Action Canada Workshop

Toronto, OntarioNovember 2018

• Advocacy power• Data liberation• Digitally enabled services• Local communities• Resources• Mental health services

We need…We need …

A diabetes registry has the potential to drive our goals of accelerating research and citizen priorities-

but how do we create meaningful and ongoing engagement?

Diabetes Action Canada Workshop 2019

People who live with T1D People who research T1D

• Difficulty connecting to and participating in research

• Are not consulted on priorities that address their fundamental needs (vs. interests of decision makers)

• Struggle to find and recruit patients

• Rely on bricks and mortar approach

“I want to be part of studies, but they need to match with my life and values, and be a positive experience.”

I want to know about studies.People living with T1D want to know about studies that are occurring in Canada and beyond.

I need to be able to easily determine if this study is important to me. Difficult to decipher whether studies are relevant to their values and interests.

I deserve to know the status and results of studies I participate in.Knowledge translation back to patients is poor and infrequent.

My study experience matters.Studies do not adequately account for participant burden or explicitly communicate the commitment

How do you engage the people who struggle the most? We must make it a priority to develop tactics that reach those who are isolated either by geography, socioeconomics, or disengagement.

ideation

Ongoing co-design sessions with people living with T1Dn= 20+, total respondents= 76

implementation

co-design

validation study1. Conduct semi-structured interviews with

patients, clinical researchers, and providers, to better understand their relationship with research inter and intra provincially.

2. Validate the ConnecT1D platform’s value and UI with patients and researchers.

Status: Started with Province #1 (Manitoba)

connect1d studyEvaluate the platforms ability to drive meaningful engagement between patients and researchers.

Status: Study protocol under development, to be submitted to UHN REB by February/March 2020.

• Recruit a minimum of 3,000 individuals living with T1D across Canada.

• Recruit a minimum of 20 studies to be submitted on the platform.

team

Partners: JDRF, CIHR, T1D Exchange, University of Toronto Faculty of Law

Shivani Goyal, Scientific Co-leadLead Strategy, eHealth Innovation, UHN

Peter SeniorScientific Co-lead for ConnecT1DScientific Co-lead, Innovations in T1D Research ProgramDirector, Division of Endocrinology and Metabolism, University of Alberta

Bruce PerkinsScientific Co-lead, Innovations in T1D Research Program

Kate FarnsworthPatient Partner Co-lead, Innovations in T1D Research Program

Tracy McQuireProject Manager, Innovations in T1D Research ProgramOperational Manager, DAC

Thank you!