Workshop on Patient Generated Data - Toronto, Apr 15, 2019

[A Former User]

Patient Generated Data Workshop 2.0 - FREE

LOCATION: Pink Cube at Women's College Hospital, 76 Grenville St., Toronto

DATE/TIME: April 15th, 2019 from 9:00am - 1:00pm

HOSTS: Better Access and Care for Complex Needs (BeACCoN) Network and PAN (the Patient Advisors Network).

The Patient Generated Data Workshop 2.0 seeks to follow up on the success of the first workshop by:

1. Looking at the current state of patient-generated data in greater detail
2. Exploring models from other jurisdictions and sectors that could inform an approach in Ontario
3. Discussing a draft framework for principles for patient generated data.

A number of you responded to our survey -- many thanks! This is an opportunity for you to participate in person if you are local to the event. The agenda is attached.

Please let Samira Chandani know if you are planning to come. Samira.Chandani@gmail.com[ Agenda for April 15th - PGD 2 0 (2).docx](http://patientadvisors.groupsite.com/file_cabinet/files/946573/download/Agenda for April 15th - PGD 2 0 %282%29.docx?m=1554409644)

Attendees of this workshop will include patient partners, policymakers, researchers, and developers.

BACKGROUND

PAN has partnered with BeACCoN, the SPOR network in Ontario that supports primary care research, to develop a Collaboration Framework and Principles for working with PGD.

On September 10, 2018, BeACCoN held its first workshop on patient generated data at Women's College Hospital. Attended by patients, policymakers, researchers, and developers; the objective of the workshop was to discuss the principles, priorities, and challenges that important stakeholders have regarding patient generated data, and begin to map them for the patient-generated data initiative in Ontario.

Key findings from the day revealed an overlap of principles, priorities, and challenges that were common among the various stakeholders. Additionally, many of the principles and priorities were also often seen as potential challenges as well. Common principles between the groups included transparency, especially with regards to the kind of data being collected, and who it's being collected by; patient centeredness, especially with regards to patient being expert partners, and acting as data custodians; utility, that is purposeful collection of the data and ensuring that the data collected has a meaningful use; and finally patient access to their own data. Common priorities among the stakeholders included open access to data, portability of the data and an ability to share the data, creating data linkages, and ensuring accurate data. Finally, the various challenges that were voiced by the stakeholders included the complexity of consent, privacy, and governance of patient-generated data. Other issues, also included in principles and priorities, involve appropriately including the patient voice; having data available in real-time and the portability of and access to data.

On February 26, 2019, the Ontario Minister of Health and Long-Term Care introduced Bill 74, The People's Health Care Act to support the provincial government's proposed plan for health system transformation. Through this transformation, the provincial government hopes to improve the patient and caregiver experience and to achieve better patient and population health outcomes. One method to achieve this goal is to improve access to secure digital tools, including better access to online health records and virtual care options. With an emphasis on modern, digital health care, patients will be better able to make informed decisions about their health and will become more empowered when it comes to their health.

We envision that patient generated data will play a large role in the near future in the provincial's government vision to transform the health system. As such, we invite you to come share your insights, join us in discussion, and learn something new.