Citizens for Digital Health engages citizens in the digital transformation of healthcare now underway. We engage with citizens to understand what matters to them, to empower them by building their digital health literacy, and to connect them with digital health innovators to help shape future directions.
Digital Health refers to the use of information technology, electronic communication tools, services and process to deliver health care services. It may also involve artificial intelligence, genomics and big data but it’s really so much more!
Digital Health offers the promise of person-centric care and a true transformation of the individual and family’s role in their own health care. It has a strong focus on health and wellness, not just illness and disease, that is achieved by enabling and empowering people to manage and control their health and wellness journey of care. New technologies can make data accessible to caregivers and patients leading to shared decision making. This puts you in control!
What We Heard from Citizens
In 2019, Imagine Citizens Network, along with other organizations, engaged with 400+ Albertans in a livestreamed one-day conference Partners in the Power of Information Sharing: Educate, Empower, Engage that explored digital health understandings, realities and adoption. The conference aimed to address the role of citizens in the discussion and decisions surrounding sharing health information, eHealth and digital health.
Five themes emerged from the conference. Here’s the full report of What We Heard that day.
|Citizen/Community/Patient Engagement and Advocacy|
|What can we do as citizens, consumers, families, patients and taxpayers to move our digital health technology priorities along quickly? How do we ensure that the digital health transformation is influenced by patients/citizens?|
|Equity and Diversity|
|How can we ensure a diverse group is engaged so that technological advances are useful to all of us?|
|How do we address low health literacy and low technology literacy?|
|Privacy and Security|
|What are the privacy concerns in rolling out digital access to medical info?|
|System-level and Policy Changes|
|How do we ensure citizens become custodians of their own health records? What needs to change in our Canada Health Act and our public health care system to increase innovation, transformation and information exchange?|
Statement of Principles: Personal Health Information
As a result of our 2019 conference, and in partnership with Greg’s Wings, Imagine Citizens Network developed a Statement of Principles for Personal Health Information. Information is critical to healthcare experiences and patient safety. This statement sets out our intentions and will serve as a guide to continuously work toward in our healthcare system.
Ultimately, we would like to use the Statement as a prompt to start conversations with Albertans about their rights to access their Personal Health Information and to guide and influence policy and precedents in the province.
Digital Health Literacy
Health literacy is about having the skills and knowledge to access, understand and use health information and services (including when they are electronic/digital) so that you can make appropriate health decisions. Citizens for Digital Health and the iKNOW Health team are currently working to develop a Digital Health Landscape map showing the available tools, information and services. This will provide a foundation for us and our partners to develop literacy-building resources for citizens.
Co-designing with Digital Health Innovators
Imagine Citizens Network believes in putting citizens at the centre of digital health innovation by promoting co-design with technology innovators. In the past we’ve partnered with innovators to provide them with the feedback and insight from citizens that is critical to designing an effective solution. Further co-design events are being considered for the coming year. These events are also valuable to citizens who are able to learn about new ideas and innovations that could impact their healthcare experience.