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Zal Press and Anna Greenberg

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.

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3 comments on article "Pain and parking: Capturing the patient experience"

Joan Conrad

This is an excellent article and could lead to more effective and relevant of patient experience and measuring what really matters to their family and caregivers.

Carole Orchard

i have been studying the role of patients in their own care for the past 4 years. As a nurse I have become to realize the disconnect between the 'control' health professionals exert on patients (especially around treatment regimes) and how patients live from day to day in their own self-care. I am now testing an instrument around the patient and their ongoing self-care that is based on their lived experience. This instrument focuses first on patients with diabetes since this is such a large percentage of those having to live with their disease and who feel 'victimized' (as they have told me) by their health professionals. I have also pulled items from my other psychometrically tested instruments on collaborative team work with patients to create a short version for patient use that allows them to measure how well the health professionals involvement them in their own care. if you are interested in this work please let me know. Thank you for reading this comment.

Dianna Inkster

I'm very concerned about the type of care and the public funding available for the necessary technology. PM me on fb at Dianna Inkster and we can "talk" further. My husband (a disabled individual) has been a type 1 diabetic with hypoglycemic unawareness for 41 years. We have the best technology for managing blood glucose levels on the market today, but that's because of the province where I live and the fact that we have extended health benefits even though my husband is 72 years old. A lot of people lose their EHB plan after age 65! I feel my husband is a victim of not only his endocrinologists, but also of a system that insists despite the complexity of diabetes management that the patient come hell or high water look after himself at all times! It's time paid healthcare workers learned to look after those who can't fully look after themselves and their disease.

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