It was 2015 when the AMA launched albertapatients.ca, our unique and successful online patient community. Looking back, we see that this precocious three-year-old has been talking a blue streak with patients about health care – and shows no sign of slowing down.
This website is an online forum for Albertans to come together and participate in conversations about health care. To join, visitors must register to create an account, confirm their membership by email and complete a member profile.
Today, more than 6,500 Albertans are enrolled and membership grows every week. We are grateful for the enthusiasm and insight of our members! There has been value from the surveys and other activities they have completed, but even more important and significant are the ongoing relationships that are developing: both among albertapatients members, and with the medical profession through the AMA.
Read on to learn more!
What happens in albertapatients.ca?
Members create accounts on our secure website to access health-related information and participate in a variety of activities:
- engagement and research surveys
- member-exclusive newsletters sharing survey results
- quick polls
- moderated discussion forums
- targeted Q&A sessions with health experts
- health-related news and updates
Patients also have opportunities to interact with each other and with the albertapatients team in open discussion forums and by sharing questions and discussion topic ideas on our website.
Who are they? What do they like? Why do they care?
Albertapatients members live in cities, towns and communities throughout the province, and people of all ages are participating: the youngest member is 19 and the oldest is 89. The majority access health care services at least once every few months, most often seeking primary care and laboratory/testing services.
Over 96% of members have a family doctor or usually visit a specific clinic for their primary care needs. The average length of time these patients have been seeing their current doctor is around 10 years. 27% of members with complete profiles identify as caregivers and regularly assist a family member who has a chronic or disabling medical condition. Just under 50% of profiled members have a chronic condition for which they require regular/frequent doctor visits.
To show that we are listening and that member input is making a difference, we share all our results with the community. We share survey results in monthly newsletters sent by email and downloadable from albertapatients.ca. We’ve dedicated a page of our site to talking about what’s new – survey results, trending forum discussions, frequently asked questions, links to news releases and articles that we think our members will find interesting, and more! For social media users: we regularly post albertapatients updates to keep interested Albertans informed about what we’ve been up to and what’s coming next.
What do they talk about?
Over the past three years, albertapatients members told us about the issues that matter most to them. It has been rewarding to observe the way people are working within the community, over time, to make a difference in the health care system we all share. In 2018-19, the AMA Board will be looking for the guidance of albertapatients members as we consider how to engage patients and bring their voices into decision-making about health care.
Here is a sample of topics that the community has explored:
- Health care system measurement: Is it possible? Do they care?
- Caregiver perspectives: What are the challenges, the rewards and the help that they need?
- Mental health: What are the issues for families and individuals dealing with mental health?
- Prescription medication: Do they get the prescriptions they need? Are they informed about choices? Can they afford the medications they need?
- Medical wait times and effects on patients: What is a “reasonable” wait time? Why do they think patients have to wait? How does waiting affect health, family and life in general?
- Physician assisted dying: How do people feel about it? What concerns them? What do they think happens after they die?
- Moderated seniors’ care discussion forum: Caregiving, navigating, identifying resources
- Primary care: Benchmarking and tracking studies about the patient experience
- Emergency department assessment: What do they understand about how emergency departments work and who gets seen first? What has their experience been?
- Electronic patient records and sharing (Community Integrated Information): What do they expect about how their health information will be shared, by whom and for what purposes?
The information flowing from all this conversation is shared with the AMA Board and our health system partners. On several occasions, we have given our panel the chance to participate in surveys for our partners like Alberta Health, Alberta Health Services and Health Quality Council of Alberta.
Why do we do it?
Health care is all about patients, yet patients rarely get the opportunity to provide input about the health care system. By understanding patients’ perceptions, experiences, needs and challenges, we can drive meaningful change in areas that will directly impact health care system users. Albertapatients.ca provides an opportunity to educate patients about what resources are available and how to access them, provides strategies for getting the most out of health care services, and fosters important dialogue between patients and providers.
Finally, albertapatients.ca is a unique and valued opportunity to reinforce the special relationship between doctors and patients, and it enables organized medicine to credibly represent the patients’ interests.
So Happy Third Birthday, albertapatients.ca!
For further information or to request patient invitation cards or posters for your office, please email shannon.rupnarain@albertadoctors.org.