How many patients does it take to engage a hospital?
NPSF report makes suggestions, critics argue for more
When you bring up the topic of patient engagement to hospitals, most of them think immediately of a committee — a patient and family council or having patients and families participate in some way on some of the many committees that help make hospitals run smoothly. But the National Patient Safety Foundation wants you to know there is more to patient engagement than committees, and in a new report, Safety Is Personal, it outlined some of the things that hospitals should be thinking about to get patients more involved in their care, how it is delivered, and the running of the organizations that deliver it.
Having a patient on a committee is not ever going to be enough in terms of patient engagement, says Susan Edgman-Levitan, PA-C, NPSF board member and the lead author of the Safety Is Personal study. At Massachusetts General Hospital in Boston, where she works as the executive director of the John D. Stoekle Center for Primary Care Innovation, patients and family are encouraged to participate in informal ways as well as formal ones. For instance, if marketing is working on an educational pamphlet, they might approach people in the waiting room to ask them about wording or clarity.
The report included dozens of things healthcare organizations could, and should, do that would improve patient involvement, according to NPSF. Many of them have been written of before, but Leah Binder, MA, president and CEO of the Leapfrog Group in Washington, DC, says that while they may sound familiar, very few hospitals have implemented more than one or two of them.
"The executive summary of this report doesn’t do it justice," she says. "The checklist at the end of it should be hanging on the walls of very hospital in this country. Every hospital and system should be doing all of this, and only then, when they are all doing all of the things in this report, can they complain that the list is boring and derivative."
Places to start
The healthcare industry is "so far from listening to patients too much" that it’s hard for Binder to choose one or two places for organizations to start. Inevitably, it will be in the easier places, such as having a patient engagement committee and getting a patient representative on the board. Next might be getting patients involved in quality. Mimic organizations like Virginia Mason in Seattle, which has a patient tell a story at every board meeting, Binder says.
But there are some much bolder ideas in the report that Binder would love to see implemented by hospitals — and soon. For instance, full open access to healthcare records in real time — an idea buried at the end of the checklist — would potentially have a positive impact on patient compliance with treatment plans. "There is great language in the report about shared decision-making, and about problems that we have with the words compliance and adherence," she says.
One thing she would like to see is to have louder voices in the consumer space that are not funded by pharmaceutical or disease-specific organizations. Hospitals are a great place to help harness that. "Err on the side of too much, and don’t worry about patients mucking up. We need disruptive engagement," Binder says. "We need patients who have suffered near misses, errors, and mistakes to tell what has happened. It will force you to look differently at business as usual."
Hospitals aren’t strange to us, but to patients they are, Binder continues, so they approach it from a different perspective — a valuable perspective from which hospitals can benefit and learn to think differently.
"The healthcare establishment consistently underestimates patients," says Helen Haskell, president of Mothers Against Medical Errors, a Columbia, SC-based advocacy group. Haskell was one of the authors of the Safety Is Personal report.
"Every institution that tries to do this is afraid that patients will say no. But they don’t. No one says no, and the hospitals find this surprising," she says.
Haskell has heard all the reasons why not to include patients in a variety of hospital activities. Along with not being able to find someone, she has heard folks say that they won’t be able find people who are smart enough to "get it," or that they will be disruptive, or angry.
But Haskell says everyone who participates in the running of a complex system needs some training, whether he or she is a housekeeper or a CEO. Training isn’t a big deal.
As for disruptive presences, they exist in all places, too, and for the most part, people aren’t disruptive. If you don’t have people generally yelling at meetings, someone new won’t yell. If you take turns talking, stick to your agenda, encourage polite discourse, and allow everyone a voice, chances are, you’ll do just fine, Haskell says.
"I think hospitals are fearful of patient input because they worry it will be critical and upsetting," Haskell says. "But families who are in the hospital a lot are interested and engaged. They want to be a part of making things better. If you ask the nurses and doctors who they think would be a good resource for a project or committee, I promise you, they will have ideas. There is no shortage at all of people who you can turn to. You just have to ask."
The patients and family members should be on committees throughout the hospital, particularly on those related to safety and quality, she says. There should not just be a token one or two, either, and they should reflect the make-up of the population you serve. That may mean searching for bilingual or racially diverse folks, but Haskell again notes that if you ask the frontline providers, they will have some great ideas of strong voices for you to use.
"Don’t worry so much about getting the right patient," Haskell says. "You want a true reflection of what is happening. Get the angry voices, hopefully couched in polite terms. You don’t want a sanitized picture of what happens in your hospital. You want the real picture. You will learn more that way."
Even a couple years ago, Haskell wouldn’t have thought that patient engagement would have moved as far as it has. The trajectory is in the right direction, patients are making it onto committees and getting involved in patient safety and quality discussions. But that’s just one part, she says, and it’s not nearly enough.
Teaching of caregivers
"What is far more important is the way you interact with the patient at the bedside. Open access to medical records, having bedside rounding at change of shift, family visits at any time, and patient-friendly discharges — those are all things that are at least as important as putting a patient on the hospital board," says Haskell. "They are fundamental changes that patient advocacy groups can tell you about right now, that are about the interaction between the patient and caregiver."
She’s working on creating patient-activated rapid response teams so that patients themselves can indicate an emergency. The pushback is the same as the pushback that occurred when families were given the option to call for rapid response teams several years ago in some hospitals — that there will be so many false calls for help that no one will pay attention to the real ones.
Haskell would also like to see better teaching of caregivers on how to be empathic, how to resist reacting negatively to people who might not be behaving well because they are sick or scared or in pain, and how to pay appropriate attention to family members. "That would be a great start," she says.
But if Haskell had a top-three wish list, it would be for all hospitals to allow 24/7 family presence, bedside change of shift rounding, and open medical records.
In the end, this isn’t something hospitals will have a choice about, Binder says. "We haven’t traditionally asked patients is this a good idea’ because we haven’t viewed them as our customers. But more and more they are paying the bill. In 2012, one in six workers were covered by high-deductible health plans. A National Business Group on Health Survey that came across my desk said that a third of their members’ employees would be in the near future. Patients will be paying the bill, and after they ask how much the bill is, the next question they ask will be, What do I get for that money?’"
The report by the NPSF can be viewed at http://www.npsf.org/wp-content/uploads/2014/03/Safety_Is_Personal.pdf.
For more information on this topic, contact:
• Susan Edgman-Levitan, PA-C, Executive Director, John D. Stoeckle Center for Primary Care Innovation, Massachusetts General Hospital, Boston, MA. Email: firstname.lastname@example.org.
• Doug Wojcieszak, Founder, Sorry Works!, Glen Carbon, IL. Email: email@example.com.
• Leah Binder, MA, MGA, President & Chief Executive Officer, The Leapfrog Group, Washington, DC. Telephone: (202) 292-6713.
• Helen Haskell, President, Mothers Against Medical Errors. Columbia, SC. Email: Haskell.firstname.lastname@example.org