More Patient Input Needed for Healthcare Guidelines
June 1, 2022 4 minutes read
As healthcare enters the post-pandemic period, many healthcare organizations are making long-term changes to processes and policies. Some tactics used during the COVID-19 surges might be useful for ongoing healthcare practice.
Just as health systems continue to move toward patient-centered care models, they also need to consider engaging patients and their caregivers in the process of developing new policies, guidelines, and methods for improving care transitions and care management.
“As we’re moving toward recovery from the pandemic, engaging patients and caregivers is important as we figure out which changes should remain out of the things we’ve implemented during COVID,” says Sharon Straus, MD, FRCPC, MSc, HBSc, head of medicine at St. Michael’s Hospital and director of the Knowledge Translation Program in Toronto. “We want to make sure patients feel valued and their input is valued. Ultimately, it involves optimized clinical care, and if they’re not part of the process, then why are we doing it? It’s like devaluing them if we’re not engaging them adequately.”
Straus and colleagues studied the Patient Engagement Evaluation Tool (PEET) and highlighted a practical way to engage patients, assess the quality of their activities, and include their input.1
“The tool doesn’t take a lot of time to use, and it can inform us on a variety of patient activities,” Straus explains. “We tested different ways of engaging patients in that research process [before] COVID. We found it to be a really useful tool.”
Practical Patient Engagement
PEET was used with the Canadian Task Force on Preventive Health Care during guideline development. But it also could be used by guideline developers worldwide, including the U.S. Preventive Services Task Force.
Straus and colleagues tested two versions of PEET: one with six items and the other with 12 items. Both worked equally well, Straus says.
“We encourage people to use the six-item version,” she adds. “The tool assesses engagement and whether it is successful across a variety of domains, including trust, respect, fairness, competency, legitimacy, and accountability.”
Each person who completes the tool reports whether they feel respected and if the process was fair and legitimate.
For example, PEET includes these questions:
- To what extent did you feel comfortable contributing your ideas to the engagement process?
- To what extent did all participants have equal opportunity to participate in discussions?
- To what extent did you clearly understand what was expected of you during the engagement process?
The goal is to obtain patients’ input to develop new guidelines in a way that is helpful and meaningful.
“If we’re not spending sufficient time developing the partnership, it can be tokenism,” Straus says. “At the onset of a project to interpreting and disseminating the data, patients are heard.”
Any time a case management team or health system decides to create a policy, new practices, or program, they can use PEET to ensure patients are engaged and part of the development process.
“Case managers can read the tool and get answers,” she says. “They can use it at different points along the way.”
For instance, clinicians can use PEET to see if patients are engaged in a process initially, and then six months or nine months down the line. It can be used throughout a process.
“You can use the tool and think about how we’re engaging patients in so many different activities now,” Straus. “You can use it to tweak strategies when patient engagement is not optimal.”
Patients Reported Trust, Respect
For example, the tool was used to evaluate the effectiveness of geriatrician-led models of care.2 Patients, caregivers, geriatricians, and policymakers were involved in the process. They provided input on a review of the comparative effectiveness of geriatrician-led models of care across healthcare settings. A study of their engagement revealed patients and others involved in the process felt engaged in all activities and reported levels of trust, respect, and feelings the process was fair and legitimate.
Investigators found patients selected different outcomes than those selected by researchers or policymakers. This influenced their engagement and the process.
“You can see how engagement of the patient can change things,” she explains. “It goes back to the accountability piece, where we need to make sure when we’re doing these projects that we’re held accountable and we don’t engage patients for the sake of engaging patients.”
Leaders need to ensure patient feedback is heard and incorporated into process and policy changes.
“There’s no quicker way to disengage people than to bring them together for an exercise and then not including any of their feedback,” Straus says.
REFERENCES
- Moore A, Wu Y, Kwakkenbos L, et al. The Patient Engagement Evaluation Tool was valid for clinical practice guideline development. J Clin Epidemiol 2021;143:61-72.
- Soobiah C, Straus SE, Manley G, et al. Engaging knowledge users in a systematic review on the comparative effectiveness of geriatrician-led models of care is possible: A cross-sectional survey using the Patient Engagement Evaluation Tool. J Clin Epidemiol 2019;113:58-63.
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