Lessons About Patient and Family Involvement from the NPSF Congress

[two_third]
Confession is so good for the soul! As I’ve told people recently, although the focus of the Washington Patient Safety Coalition has been on improving safety for patients since its inception in 2002 – after all, we are the Washington Patient Safety Coalition — until last year we were heavily provider-centric. That was an appropriate way to begin and to grow, given our origins and founders, and I’m proud of our work. I’m also proud that our leadership and community have made patient and family engagement our highest-priority goal. I attended the May 2014 National Patient Safety Congress on a scavenger hunt to learn as much as I could about meaningful patient and family engagement in health care. What are other organizations doing? What were their challenges and successes? Here’s a summary of some of what I learned.

The University of Michigan Health System, which is a pretty far along the path of disclosure and other critical aspects of addressing errors, talked about its engagement of patients and families in the reviewable adverse events process. Frankly, I think the prospect of involving patients and families in this way is frightening to a lot of us – there’s no better word.

These are a few nuggets that struck me:

• After an error, the respective timelines of the organization and the patient/family are very different: the organization moves very quickly and may be into the review phase before the family fully understands what happened or is still happening.
• Some of the potential opportunities of engaging patients and families are these:
  • Gain a thorough opportunity of what happened, from the patient/family point of view.
  • Dispel misconceptions – among all parties.
  • Contribute to a cultural shift – this involvement will become the standard, and patients and families will expect to be engaged in this way.
• There are also challenges, among them these:
  • Clarifying the purpose: what will the patient/family member get out of the experience?
  • As noted above, there are competing agendas and differing timelines.
  • Transparency: if the patient/family member is right there in the root cause analysis process, will providers be candid? Will the patient/family member be intimidated?

Think about it: are you ready to engage patients and families? The UM Health System surveyed its Patient and Family Centered Care Council with a scenario-based tool, asking “Would you want to be engaged?” in several aspects, among them the following:

• What type of review would you want to participate in?
• Would you want a support person present, and if yes, who?
• What benefits would you expect to come from their participation – prevention, acknowledgement, compensation, answers, other?
• By whom would you want to be contacted – attending physician, nurse social worker, other?
• How soon after the event would you want to be contacted?

I think that any organization that is thinking about how to involve patient and family involvement – and I hope we all are – could test the waters in a number of ways: conversations with its patient and family advisors, focus groups, surveys, etc.

Logan Regional Medical Center, a hospital in a rural area of West Virginia, described another model of patient engagement. This hospital, which at the time of the presentation did not have a Patient Advisory Council (and which seems to have had minimal, if any, patient involvement other that what is described below), had an Emergency Department improvement program, but recognized that the patient voice was missing. It did have an important precursor of success, executive-level support: the Chief Nursing Officer has used patient advisory panels at another organization.

The hospital involved a person in the ED improvement work who was a voluntary patient advocate and voluntary chaplain; he also has a chronic condition and is well-known to providers and staff from multiple ED visits and admissions. Not all of his experiences had been positive. The hospital formed a process improvement team that included him. Some of the points shared by both patient and providers were the following:

• From the patient’s perspective, a benefit was being open to seeing the processes of the hospital and how things work so that he could provide meaningful feedback.
• Providers were able to learn directly from the patient instead of speculating. The patient helped the team think about the box by asking “Why?” The culture was very negative and it was hard to see the possibilities for change; having the patient there brought back the focus.
• The providers also recognized that the patient’s experience in the improvement effort would be shared – word travels fast.
• The ED physician and the patient both said that patients need to get more involved with change.

What did I learn from these two very different organizations? Both recognized the value of patient and family involvement but were uncertain about how to proceed. Each was committed to the effort, developed processes, and learned from the experience. I was impressed by their work. As a Logan Regional provider and a patient said, ”We don’t need to be afraid of the patient”… “And vice versa.”

Comments? Share with us here Miriam Marcus-Smith, Program Director.
[/two_third]