A conversation between Alies Maybee and Anna Greenberg
Anna Greenberg: One of the widest chasms in digital health care today is the divide between people’s wish to access their own medical records electronically and their ability to do so. According to a 2018 Canada Health Infoway survey, 74% of Ontario residents who currently have no access would like electronic access to their health records, and only 31% currently can access their own health records.
One of the most convenient ways for patients to access their medical information is through a patient portal. These have existed for more than a decade at individual hospitals and are now becoming more widespread – but still only to provide information from one institution.
Depending on the portal, patients can view:
• Physician notes, personal medical history and medication records
• Laboratory and test results
• Appointment details
• Electronic means of communicating with your physician
• General medical and health information
On our own patient and family advisory council, only a few members have had experience with such a portal. Those who did told us it made a world of difference. Others talked of struggling to assemble this type of information themselves.
Alies Maybee: I recently attended a conference hosted by Canada Health Infoway where Julie Drury, chair of the Ontario Minister’s Patient and Family Advisory Council, described the challenges of compiling and managing information about her daughter’s care at multiple hospitals. She showed the huge mound of paper binders of medical information that she had to cart around and keep updated. And this was only a few years ago. I think patient portals have the potential to significantly ease this burden, but portals need to give patients access to more of their information and be better connected with each other when they exist at different care settings.
Over the last five years, several organizations in Ontario have developed and shared reports to support primary care clinicians in their efforts to improve patient care. Until now, these reports were produced independently and in a largely uncoordinated fashion.
Each of these initiatives were intended to fill an important gap in access to information. It wasn’t too long ago that there was no mechanism for family physicians practicing in Ontario to see comparative data on their own practice. As recently as 2015, less than a third of family physicians in Ontario reported routinely receiving information on how the clinical performance of their practice compared with that of peers. In contrast, 70% of family physicians practicing in the UK reported receiving this type of information.
Though well-intended, the number of reports in Ontario then became overwhelming. Many family physicians indicated they did not access or read the reports they were receiving due to time pressures, little relevance or concerns about validity. This was expressed by physician leaders at a roundtable called to address the issue. Not suprisingly, there was clear and shared understanding across providers of the reports that these multiple uncoordinated reporting efforts could lead to disengagement and accelerate burnout.
A Conversation with patient and family advisor Margo Twohig and Chief of Communications and Patient Partnering, Jennifer Schipper
Margo Twohig: I am totally supportive of the idea of patients being involved in the hiring practices at health care organizations. Patients should be involved in the hiring at all levels – those cleaning the building at night, working in the pharmacy, at the bedside, on the senior team – because everyone is part of the delivery of care of the organization.
Jennifer Schipper: There is surprisingly little data assessing the benefits of involving patients or family members on selection committees making staffing decisions in health care organizations. What published evidence does exist has been very positive. One of the only available Canadian studies was published in the Patient Experience Journal in 2015 and comes from researchers from Providence Health Care in B.C. An assessment was conducted with 30 candidates who were interviewed in a process that involved patient interviewers. The assessment also involved health-care leaders at Providence and patients and family members who participated in the process. The researchers concluded involving patients in the interview process had a positive impact.
Informing and connecting: If social media is supporting the development of quality care in Ontario and elsewhere, it is through effectively performing these two key tasks.
While social media may still only be used by a portion of health care providers, policy-makers and patients in the province, the platforms we have come to associate with social media – Twitter, Facebook, LinkedIn etc. – can be influential in supporting quality care initiatives.
In developing a system that we wish to be patient-centred, social media has emerged as an important platform for allowing patients and members of the public to engage with health care providers and policy-makers to make their views clear. The degree of interaction between those with lived experience with a disease or illness with those providing their care is unprecedented thanks to online communities and social media like Twitter.
The Twitter hashtag #metoomedicine, galvanized women physicians and their supporters through Twitter to demand more equity and gender equality within the medical profession and has helped bring a much higher profile to this issue. It is an example of how social media has emerged as a powerful tool for helping health care providers share their experiences and insights. It can also help providers deal with their challenges to support the fourth pillar of the Quadruple Aim in quality care – that of enhancing provider wellbeing (although to be fair, social media can also impede this by adding more time pressures to already stressed providers or exposing practitioners to frankly hostile or upsetting views or individuals).
Patients across Ontario should expect to receive excellent care from our health system. And it usually delivers. But in too many instances, the quality of care people receive can vary depending on where they live.
For example, people with a diagnosis of heavy menstrual bleeding living in the northeast are more than ten times as likely to receive a hysterectomy as people living in Toronto. Similarly, people hospitalized with a hip fracture have a likelihood of dying within 30 days of admission that varies from 3% to 16% across the 50 highest volume hospitals in the province.
Some variation in care is always to be expected because of differences in patients’ underlying health conditions or in their treatment preferences. However, wide unwarranted regional variations in practices and outcomes are often a symptom of a system that lacks focus. Several decades ago, renowned health services researcher Dr. John E. Wennberg and colleagues at the Dartmouth Institute of Health Policy and Clinical Practice in the US determined that such regional variations point to a lack of “evidence-based standards of practice”.