We are on the cusp of unprecedented change in the way health services are delivered, personalized, accessed, and funded. The rapid growth in connected personal health services, devices, and data is creating opportunities to re-imagine aspects of healthcare access and delivery, personal health and fitness, and health data.
As healthcare becomes increasingly reliant on technology, questions about who owns health information and how it is accessed become increasingly important. Understanding where data is stored, how it is accessed, and who is responsible for safeguarding it are at the centre of the digital health evolution. According to Dr. Ewan Affleck, “information is the currency of care.” Personal health data is an enabler of patient safety, better health outcomes and reduced harm.
Last summer, Imagine Citizens Network (ICN) was invited to participate in the new transdisciplinary Precision Health program at the Cumming School of Medicine (University of Calgary) which brings together future healthcare leaders, entrepreneurs, and educators to improve patient care. Precision health is a new and innovative approach to healthcare delivery. It’s tailored to a patient’s genetic, environmental, and lifestyle factors and, as the name implies, it is aimed at keeping people healthy by personalizing the prevention and treatment of individuals “precisely”.
As September signals the start of the formal academic year, students from all communities across Canada prepare for the year of learning ahead. Yet significant cultural variations may emerge to illustrate the diversities and dynamism of the student group as a whole. Equity raises awareness about these important variations with reference to fair access and participation in basic needs such as health and education, to transform social systems that serve everyone equally within their unique contexts.
Several years ago, ICN and other patient-partnered organizations initiated the iKnow Health project to help people in Alberta understand how healthcare works, how to navigate and advocate for themselves, and how to apply their rights. While that project was designed to reach a wide population with its online guide Healthcare Basics for Albertans, we knew there were significant additional challenges for rural and minority/marginalized communities. To better understand these challenges, we partnered with the Alberta International Medical Graduates Association (AIMGA) to support volunteer Connectors to host seven conversations about healthcare in newcomer communities in Alberta.
May 19 was the tenth anniversary of Greg’s death. A lot has happened since then, highlighting life-altering gaps in accessing information within Alberta’s healthcare. Much work still needs to be done.
If you are 65 and older or care about someone who is, add your voice to Alberta Health Service’s (AHS) strategic planning!
ICN is partnering with AHS to connect with Albertans to identify the most important measures of quality in AHS’s work with older adults and their supporting caregivers.
Imagine Citizens Network, through our relationship with O’Brien Institute of Public Health at the University of Calgary, is inviting you to participate in Giving Day – our most significant donor campaign of the year. Your gift will go twice as far with the matching funds offered by the University.
Last year marked a turning point in our evolution. Since our inception seven years ago, we have been a volunteer powered organization. Last year we received a donation of $150,000 ($50,000 over three years) allowing us to begin to hire core staff.
In the coming year, we will continue to build our foundation (technology infrastructure, staffing and funding) as well as focus on two key initiatives:
This is the second in a series of articles about Patient Storytelling.
Patients share their health care stories in public for many reasons: fundraising purposes, media exposure, advocacy efforts, and to educate or to support quality improvement projects. We even tell a version of our stories when we simply submit a biography or introduce ourselves at a meeting.
I’ve had many experiences writing and speaking my own story as the mom of a young man with Down syndrome and as a recent breast cancer patient. I’ve spoken with the media for advocacy campaigns, explained parts of my story at committee meetings, lectured at grand rounds and presented at health conferences. Most of these experiences have been positive, but some have gone side-ways.
This is the first in a series of articles about the power of patient stories.
“I tried all sorts of storytelling to write my way through my cancer. I wrote in my journal. I handwrote in the variety of little notebooks that I carried around with me. I typed out thoughts on my phone. I texted myself…” -Bird’s Eye View book
Stories matter in healthcare and they promote citizen engagement in health and care issues. Early this year, we embarked on a project to produce five digital stories with our Child & Youth Mental Health group.
Digital storytelling through its use of photos, participant voices and music can meaningfully capture and share poignant personal stories. With a skilled facilitator, it’s a highly effective approach to share lived experience while also empowering storytellers and promoting and protecting their wellbeing. With the storyteller’s permission, these stories are then used to initiate conversations on issues that are of concern to the storyteller.
This aphorism is useful in many settings, including when talking about person-centred care (PCC) and about patient engagement, without which PCC will never achieve its promise. It’s relevant because when communities and citizens continue to accept non-person-centred healthcare, they are effectively promoting non-engagement.
A Declaration of Health Data Rights, endorsed by ICN and other organizations, has been published for the first time in Canada offering citizens a much needed guideline to their rights regarding health data and their control of it.
There is an adoption problem with the concept of person-centred care (PCC). The precepts of this concept were detailed almost 30 years ago, and it has been vigorously promoted ever since. And while a commitment to PCC can be found on every Canadian health system website, it’s struggling to gain traction in what continues to be a discouragingly provider-driven healthcare system. What’s afoot? Why the crazy slow adoption of PCC?
IMAGINE Citizens has refreshed its brand to become Imagine Citizens Network (ICN)! Our new name and bold new logo will better support us in building awareness of who we are and what we’re about as we continue to grow our presence in Alberta. We are indeed a network of health citizens, community partners, health-oriented organizations and innovators aimed at transforming health and care in Alberta.
Amateur and professional athletes agree that there is little that compares to the joy of participating on a highly functioning team. Interestingly, the same applies in healthcare.
It was a special experience for me as a practicing Nephrologist (now retired) to participate as a team member in a clinic devoted to the treatment of patients with chronic kidney disease, some of whom were headed to chronic dialysis. The culture in this clinic was all about the team: nurse practitioners, dieticians, social workers, pharmacists, doctors and patients working together. Every healthcare provider was there to meet the needs of the patient, as defined by the patient, during every visit. As the doctor, I was just one team member, no more important than any other. And the captain of the team? That was the patient.