Using any number from 0 to 10, where 0 is the worst hospital possible and 10 is the best hospital possible, what number would you use to rate this hospital during your stay?
Each year, tens of thousands of patient experience surveys with questions such as these are sent to patients after their hospital stay. The surveys address overarching themes about their hospitalization, such as arrival and discharge, care from nurses and doctors, and overall ratings of the hospital. They are typically sent to randomly selected patients anytime from a few weeks to several months after discharge. Surveys collecting patient experience data have been ongoing for 20 years. But what happens to the data and what have we done with it?
The answer is complicated. Most patient experience surveys have, until recently, primarily focused on quantitative data. And while this data highlights areas of care that require improvement and further focus, numbers alone often provide incomplete information about the patient experience. An overall rating of four out of 10 for a hospital might signal poor performance, but cannot itself provide any further information that might prompt meaningful change.
Nonetheless, surveys provide crucial information about the areas of the patient experience that could be improved. Furthermore, there is a push both provincially and federally to collect and release patient experience data in a more accessible way to both health care providers and the public. To this end, the Canadian Institute of Health Information (CIHI) recently released the first cross-province comparison of patient experience data.
There is also change under way in terms of how patient experience data is collected and understood. Survey results provide a longitudinal perspective on areas of care, but more nuanced information is needed to inform quality improvement activities. Therefore, new initiatives at both the institutional and provincial levels are focusing on collecting and reporting more timely data, as well as directly involving patients to improve patient experience initiatives.
The results are in
The first phase of the CIHI data came out in April 2019 and focuses on comparisons at the provincial level in three key areas of communication. Five provinces—Ontario, British Columbia, Alberta, Manitoba and New Brunswick—voluntarily participated in the initiative, and two more provinces, Prince Edward Island and Nova Scotia, are expected to join this year.
CIHI’s results reflect data collected between 2015 and 2018. Among the three areas described, coordination of care—which involves “effective communication among health care providers”—ranked the lowest, with only 50 percent of patients reporting that their care was well coordinated. Fifty-four percent felt that new medications were explained well. Support leaving the hospital ranked highest, with 75 percent of respondents reporting that discharge planning was done well.
Between provinces, there were some notable differences. In Alberta, 62 percent of respondents felt that their medications were always explained well, compared to British Columbia, where only 50 percent felt similarly. British Columbia also lagged behind in patients’ overall hospital experience, with 57 percent of respondents feeling that their experience was very good, whereas 63–66 percent of patients in the other provinces felt likewise.
It is not known how provinces or hospitals will act on these survey results. This comparative provincial data has not been available previously. But data from 2015 to 2018 may be criticized for not being reflective of what is happening in 2019 (although quality of care likely doesn’t change all that quickly). Jeannie Lacroix, manager of performance improvement and capacity building at CIHI, recognizes that the collection and release of this data is just the beginning. “Our goal is to work toward facility-level reporting, to provide that ongoing quality improvement [information] so [hospitals] can track their results over time,” says Lacroix. Phase II of the CIHI data release will focus on institution-specific data and is expected to be released in the spring of 2020.
Why is improving patient experience so challenging?
Patient experience is a broadly defined area in health care, without an agreed-upon definition. The Beryl Institute, a global organization dedicated to improving the patient experience, defines it as “the sum of all interactions, shaped by an organization’s culture, that influence patient perceptions across the continuum of care.” The challenge is that there are so many components to the patient experience that it is very difficult to demonstrate a global improvement in patient experience ratings.
Further, patient experience initiatives compete with other priorities such as patient flow, bed availability and staffing. In a health care system with limited resources, focus on the patient experience can wax and wane. Gary Spencer, previously the director of decision support at Trillium Health System, admits that focus and priority placed on patient experience initiatives “has been a bit episodic.”
The third challenge is that, as mentioned above, traditional patient surveys have focused primarily on quantitative measures of patient experience. This often does not tell the whole story. Anna Greenberg, interim CEO of Health Quality Ontario (HQO), explains that while some surveys might reflect positively on a specific area of health care, “when you talk to patients, they don’t believe the data.” For instance, preliminary analysis by HQO of a home care survey reflected generally positively on the system. However, when HQO used focus groups and interviews to identify areas of improvement in transitioning from hospital to home, they found that “insufficiency and inadequacy of home care came up as the top themes,” says Greenberg.
To tackle these challenges, patients and organizations are coming together to redefine how we measure and understand the patient experience and how we create projects to improve it.
A move toward real-time data
Patient experience surveys have historically involved a significant lag between the collection and reporting of data. Results from surveys are typically sent to an external data collection agency to be analyzed, and it can take months for the analyses to return back to the reporting institutions. One way to tackle the slow turnover between survey collection and reporting is to move towards more timely data collection.
At Unity Health Toronto, which consists of St. Michael’s Hospital, St. Joseph’s Health Centre and Providence Healthcare, a main initiative within the past two years has been post-discharge phone calls. The calls are made approximately 72 hours after discharge, whereas patient surveys are sent out two to three months after discharge. The calls consist of a few targeted questions such as, “Did you receive enough information from hospital staff about what to do if you were worried about your condition or treatment after you left the hospital?” The data from these phone calls, along with other patient experience data, is now stored and displayed in a new organizational computer program, which features an accessible dashboard model that can be updated in real time. Currently, only certain higher management teams at the hospital and select staff have access to the dashboard. The eventual goal is to make relevant and useful data available for all staff at the hospital, including front-line nurses and physicians.
The hope is that by continuously collecting and analyzing real-time data, the effects of an intervention will become apparent rapidly and can therefore be more widely adapted or changed, depending on the results. The process might look something like this: Create a survey to collect data, identify something to change based on the results, map out what to change and how to change it, and then continuously analyze the survey results to determine if the intervention is effective. According to Greenberg, more timely data will be more relevant to both patients and health care professionals. Patients will “get to see that there is something actually being done with the results,” and health care professionals will “see [results] that are related to something that they’ve done.”
The gold standard: Patient partners and co-designing health care systems with patients
But Greenberg says patient reporting is the bare minimum. The gold standard of improving the patient experience from a quality improvement perspective is to truly co-design the health care system with patients. Angela Morin, who is a patient partner, agrees. “The patient perspective on patient experience has challenged what [surveys are] actually measuring,” says Morin. “There is a lot more attention being paid to what is important to patients in the design of the surveys.” When included in both the analysis of survey results and the design of interventions, patient partners can help “identify things that are really important,” says Morin, while other stakeholders can help identify areas “that we can actually do something about.”
For example, at Kingston Health Sciences Centre, where Morin previously worked as the co-chair of the patient family advisory council, the “Feedback Forms” program ensured that patients had adequate input at the departmental level. Morin herself participated in a Feedback Form program about scheduling and rescheduling of surgery. Participants discussed the surgical experience and areas for improvement such as the preparation process, communication, and privacy. From there, the department created a working group to address some of the issues that had been raised. Most notably, when the hospital re-designed the day surgery unit, they brought Morin back to demonstrate how the new facility addressed her privacy concerns. “So they hear the patient experience, they draw from it something that they can improve, and then they include the patient in the intervention,” says Morin.
There is still a long way to go with improving patient experience in Canada, including collecting information about that experience and partnering with patients. New initiatives are changing the way we collect, record and understand the patient experience. The hope is that, in the future, organizations will partner with patients to co-design initiatives from the ground up, so that the questions that are being asked and the initiatives that are being implemented are relevant to and directly impact patients. Increasingly, there is a belief that to begin and end the process of improving the patient experience with patients is not only logical, but necessary in order to be successful.