Patient engagement data slow in coming
Getting the words right can help
Patient engagement is one of the hottest topics around, with organizations as lofty as the Institute of Medicine recommending that patients be given ways to provide input into their medical care. But a recent analysis of patient engagement studies in acute care settings shows that there isn't a whole lot of study on the topic in the acute care setting, and what there is doesn't use consistent terminology, meaning it's nearly impossible tell what impact something has, whether interventions have unintended consequences, or if expending resources on items like tablets for patients to use makes any sense in terms of quality of care.
The study, published in November in the Journal of the American Medical Informatics Association, found just three randomized controlled trials involving patient engagement.1 Overall, only 17 studies were located that met the authors' criteria for patient engagement in an inpatient setting.
Jennifer Prey, a PhD student at Columbia University, who is the first named author on the study, says that while there is a lot known about what people are doing related to patient engagement in the outpatient arena, there just hasn't been a lot of examination of what is going on related to the acute care setting.
The group decided to look at communication access tools such as tablet computers, which can be provided to patients for a variety of reasons — entertainment, general health information, enhanced decision support, personalized patient information, or advanced communication.
"Hospitals are very isolating environments," Prey says. "You are alone a lot, but when people come in, you don't know them." Getting them involved in their care is something of a missed opportunity. So how do you capture it? For some researchers, giving them a device that includes information important to their care is one way. "But what do you give them? What do you share with them? When do you give it to them? And if the patient is not engageable, do you give it to the family member? How will your policies and procedures have to change to accommodate that?"
Those ideas are what haven't yet been carefully studied, nor has the language with which to make pronouncements on the topic been settled.
Things are improving, though. Prey notes that at Columbia they are starting enrollment in a randomized controlled trial where patients are given dynamic access to information via a tablet, usual care, or entertainment via a tablet. The outcome will be a patient activation measure. Separately, she says they are also conducting surveys with clinicians on what data to share, with whom, and doing interviews with patients to see what kind of information they might want to see on a device during an inpatient stay.
Across the country in Seattle, Virginia Mason Medical Center is working to create a standardized list of patient engagement words to use in some of its surveys. As published in the December issue of Healthcare, the list of 35 positive and negative words was culled from a larger list and designed to provide reliable "emotion" words for patients when they filled out surveys.2
According to Jennifer Phillips, innovation director at the hospital and one of the authors of the study, trying to quantify emotional experiences meant they needed to have a set list of words that were always able to be labeled positive or negative. Virginia Mason has its own management system modeled on Lean and the Toyota system that calls for regular rigorous measurement. "We were finding as we were adopting some strategies that if we wanted to quantify an emotion experience and have it be a defect for a negative emotion, we needed to be sure that we could quantify the words as negative," she explains.
Certain words that were used in the past were dependent on context, Phillips explains, and that wasn't something you could include on every survey — although some allowed for it. Think about the word "anxious," which can mean nervous, excited, or upset. And patients are also prone to accept mediocre service, so that using what is perceived as a neutral word may actually be a way of saying in another context that the experience was bad.
It was thus important to have strong positive and negative words for survey purposes. They also included a single neutral word: okay.
The list can help the organization to calculate metrics, or it can be used as a conversation starter in situations where patients can give more context to their words. "We are finding a real power when we can quantify the emotional experiences of our patients," Phillips says.
An example of a project the list is being used for is in critical care, where they were working on improving the transition of patients from that unit to telemetry. "That's a good thing, but as they used the experience based design method with families, caregivers, and staff — patients were usually out of it in that setting — families would perceive that the patient, who they were told was being moved to a lower level of care, was going to be getting care that was not as good. It busts our assumption about what words mean."
Family members had a questionnaire that included various touch points in the process: How did you feel when your loved one was admitted?; how did you feel when your loved one was cared for by the nurses? "It can look like a process flow map," Phillips explains. At the point of transfer, it was evident that family members felt confused. They were circling words and writing comments — they do both questionnaires and interviews — that clearly showed this confusion about the term "lower level of care."
That led to two changes. First, nurses in receiving units came to do a bedside handoff with the family present. If there was a potential issue indicating the patient might not be ready for transfer, it was discussed then, and brought to the nurse manager if necessary. This has led to improved communication between the nurses, and between the nurses and the family members, making everyone happy.
Some of the words that didn't make the list are surprising. To do so, 80% of focus groups had to agree it was positive or negative. Comfortable didn't make it. "The feeling was, can't we do better than that?" Phillips says. Anxious, bored, alone, calm, confused, embarrassed, nervous — they all failed the test. Relieved nearly made it, at 77.5%, and worried, at 79.9%, wasn't quite negative because 19.1% thought it was a neutral word.
The complete list of positive words is: Compassion, confident, empowered, enjoyment, enthusiastic, great, grateful, happy, hopeful, joyful, loyal, optimistic, peaceful, pleased, safe, satisfied, secure, sense of accomplishment, successful, valued.
The list of negative words is: Afaid, angry, disrespected, disgusted, depressed, frustrated, guilty, hatred, hopeless, ignored, insecure, jealous, resentful, sad.
- Prey JE, Woollen J, Wilcox L et al. Patient engagement in the inpatient setting: a systematic review. J Am Med Inform Assoc. 2013 Nov 22. doi: 10.1136/amiajnl-2013-002141.
- Russ LR, Phillips J, Brzozowicz K, et al. Experience-based design for integrating the patient care experience into healthcare improvement: Identifying a set of reliable emotion words. Healthcare 1(3) 2013;91-99.
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