Over the last decade, patient partnering has grown in Ontario to the point where it is a significant part of the culture and practice of improving health care quality. It supports a high-quality health system by bringing a vital source of insight to the table and ensuring that the work being done is relevant to patient needs. If it’s done well, patient partnering produces better patient experiences, better health outcomes and increases public trust in the system.
Plus, patients want to be included as partners. They know they can make a difference in driving positive changes and to improving health outcomes.
But how does one pinpoint the desired effect of patient partnering? We all feel patient partnership is the right thing to do, but how do we know if it is being done in a way that is truly meaningful for both patients and health care professionals?
One way to evaluate the impact of patient partnering is to understand what insights are being collected and how they are being applied to the work of improving care, case by case and cumulatively over time. Evaluation helps us know whether changes made to improve care are grounded in patient needs.
A patient’s experience interacting with the health care system is one of the most important indications of how well that system is functioning. In fact, better patient experience is one of the four parts of the Quadruple Aim for health care systems (along with better outcomes, lower costs, and an improved clinician experience). Here, patient advisor Zal Press (@PatientCommando) and Health Quality Ontario’s Interim President and CEO Anna Greenberg provide their perspectives on measuring the patient experience.
Zal Press: How do patients measure their experience in the complex world of health care? Since their reason for using the system can be about pain, let’s start there. Patients are often asked to measure their pain on a scale of 1 – 10. However, as a Crohn’s patient, the pain in my gut often feels like there’s a cat trying to claw its way out and there are many times when my pain meter hits a 12 and even a 15. Pain is also a measure of success. I remember forcing myself to get up to walk, just a day after my bowel resection, to nurture the ultimate measure of a successful bowel surgery – the passing of gas.
Anna Greenberg: For years there has been a disconnect between the type of real-world experiences of patients like Zal and how the system measures their experiences. Standardized surveys are the go-to tool used by hospitals and others to measure patient experience. However, many surveys reflect the provider or administrator view of what’s important, not the patient’s perception of what’s important, and getting access to survey results (let alone using them for improvement) can take too long. Further, organizations often focus on what happens within their four walls rather than the entire experience a patient may have, such as what it was like to be discharged from hospital.
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.
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.
A Conversation with patient advisor Diane McKenzie and Chief of Communications and Patient Partnering, Jennifer Schipper
Diane McKenzie: Patient partnering means building deeper, long-term relationships with health care professionals that lead to improved health care quality. This work is about challenges that need to be overcome. By working through those challenges – together – patients and organizations can make dramatic changes. It’s not easy. But together we are better when we are done.
Jennifer Schipper: When I first started at Health Quality Ontario more than four years ago, I was keen to “engage” patients and find out how we could work together.
One of my first meetings was with the founding president of Patient’s Canada, Sholom Glouberman, who told me: “Jennifer, patients don’t want to be engaged when it comes to health care improvement, they want to be married.”
Sholom’s phrase and sentiment has stayed with me ever since and has helped guide how Health Quality Ontario is working to help patients, health care professionals and organizations truly partner to effectively improve the quality of health care.
The speed at which this is occurring and the associated changes in language about this trend can be overwhelming to those who are not directly involved. For example, the concept of ‘patient engagement’ which was so dominant so recently, has largely been replaced by the more proactive concept of partnership.