Pain and parking: Capturing the patient experience
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.
Zal Press: Patients think about their experience in part in terms of continuity of care. I was told that my gastroenterologist of 35 years was going on indefinite medical leave. The news sounded grim. How do I establish a new relationship with someone I’m going to trust to shove a camera up my rear? And how do I deal with the care that I need now, but can’t access because other gastroenterologists aren’t able to cover all of his patients? To quote the Beryl Institute, patient experience is “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.”
Anna Greenberg: Health Quality Ontario has taken this perspective to heart especially when it comes to measuring patients’ experiences when moving from one part of the health care system to another. Our recent quality standard on transitions in care was based in part on asking more than a thousand patients and caregivers about their experiences and what matters to them when they transition from hospital to home. We are also working to augment existing patient surveys with items that ask specifically about transitioning from one care setting to another.
Zal Press: Broad-based surveys give general information, which is a start, but they often don’t capture what really matters to patients. We measure our experience by things like the cost of hospital parking and the sense of victimization that can add to the physical and emotional pain we suffer. We measure our hospital experience by whether we can sleep at night. From maintenance staff to medication administration to harsh lighting, a night in hospital can have as much hustle and bustle as the Vegas strip.
Anna Greenberg: This notion of what matters most to patients is key. A recent expert panel on home care measurement (which included patients and caregivers) urged us to re-examine what home care clients are asked about the care and services they receive. They reviewed the previous home care survey, and the resulting data, and couldn’t believe the results were as positive as they were. We are now completely redesigning the survey used to measure the experiences of people receiving home care and of their family caregivers – and changing the questions to better reflect what’s important to the client and caregiver. One result: informal caregivers will now be asked how prepared they feel for the role of caregiver and how supported they feel.
As Ontario moves towards integrated care teams, there is a big opportunity to centre our measurement around what matters most to patients and provide more timely and relevant feedback to Ontario Health teams working to make care more seamless for patients. Moreover, as we make progress on digital health in Ontario, we should also be able to move towards cheaper and more accessible ways of gathering patient feedback, and away from paper-based and land-line based surveys that only give us feedback from some segments of the patient population.
Zal Press: While building a comprehensive measurement model is good, at the end of the day health care is a human experience where humans care for other humans. In my own situation, pain is a big part of the experience of being a Crohn’s patient. As I noted, this pain can have both a negative and a positive impact on my experience as a patient. While it cannot be totally eliminated, it is important to acknowledge its existence and measure it to get a true understanding of how I feel and how my care can be improved. Similarly, other dimensions of being a patient or caregiver (be it parking fees or adequate communication) all need to be measured based on the return to the patient – what we get out of the experience.