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“Constructively Disgruntled”: Finding the Most Effective Patient and Family Advisors

By John Gauthier | Monday, April 28, 2014

IHI Lead for Public and Patient Engagement Martha Hayward is faculty for the IHI Expedition on Patient and Family Advisors: Getting the Most Out of Your Partnership. In this interview with IHI project assistant Sarah Konstantino, she talks about the keys to identifying the most effective patient and family advisors.

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Q: Why is it so important to have patient and family advisors?

I am really glad you asked me that question because most people jump to the idea that the most important thing is having a Patient Family Advisory Council, and that comes later. The first thing is to create a culture in which the leadership of the hospital or health care setting really believes in the importance of looking at care from the patient’s perspective. That will help transform the way they do business and the way they provide services.

Before establishing a Patient Family Advisory Council, leaders need to ask themselves some important questions. What are the reasons you have patient and family advisors? How do you identify who should be a patient and family advisor? How do you engage them? You incorporate patient and family advisors the same way you would incorporate any other human being into your system. We hire staff for their values, whether we know it or not. We should pay attention to each person’s values as they are coming into our system. Whether a nurse, a senior vice president, or someone doing maintenance, we should always ask, “Does this person see themselves as a caregiver?” When hiring staff, we screen for professionalism, intelligence, commitment, and passion as well as what the person has to offer. We should do the same thing for patient and family advisors.

Q: What challenges might an organization face when incorporating patient and family advisors into their improvement work?

The biggest challenge is that clinicians and staff fear exposing their truths. We live in a world where it is still believed that doctors are supposed to be perfect and hospitals know all the answers. The truth is we are all human beings. We all have strengths and weaknesses. We all have good days and bad days and there is a tremendous amount of fear that, by bringing a patient and family advisor in, you are going to be exposed, criticized, or sued. It is a serious issue. That is why it is so important to identify the right type of patient and family advisor, someone who is a true collaborator, so that you are building that initial trust. Once that trust is established, you realize you have a partner who is not there to criticize, but to learn and open the possibilities of how to do your work even better. Then everything seems to flow — but the biggest challenge is establishing that trust.

Q: What will participants learn from the IHI Expedition on engaging patient and family advisors?

The Expedition builds on what [patient/family advisor and IHI faculty member] Libby Hoy and I have learned over the past 10 years and that we’ve found consistent in people’s experiences throughout the world in engaging patients. People who are interested in engaging patients in an advisory role and those who are interested in becoming advisors can draw from this body of work that has taken 20 years to establish. We’ll talk about challenges, best practices, and tools you can use.

Q: What types of people make the most effective patient and family advisors? For example, is it better to include a person who had a bad health care experience or someone who had a positive one, or both?

Broadly speaking, I think there are three types of patient and family advisors. One type is the patient or family who has experienced harm. They tend to be very focused on safety initiatives such as hand washing and surgical checklists, for example. A family or a patient who has experienced harm within your hospital can have tremendous perspective on how to avoid that harm and be a great partner in repairing a broken system. Look for someone who is, as one of our colleagues who made up the term likes to say, “constructively disgruntled.”

A second type is the patient who didn’t have a bad experience, but had an experience that lacked a focus on his or her needs. In my experience, for example, I was one patient out of many patients who was receiving the same care, and nobody was thinking about when I go home what support systems I have when it is three o’clock in the morning. The number of times I learned things 10 minutes after I needed to know them was inappropriate and the nurses and doctors would say, “Yeah, everybody complains about that.” My question was, “If everybody complains about it, why didn’t you tell me about it beforehand?” So, I didn’t experience harm, but I had an experience that lacked patient focus or really understood the patient journey.

The third type is someone who had an extraordinary experience and feels a tremendous gratitude. Often, these are people who have suffered terribly emotionally. For example, somebody who loses a spouse over a long period of time in the ICU. They or their loved one received extraordinary care and they are so moved that they want to give back to the institution. I wouldn’t say that those people can’t be good patient and family advisors, but you do have to be careful of having “cheerleaders.” You don’t want people telling you that you are perfect at everything you do because that’s not possible.

It is important to find advisors who have had experiences, positive or negative, in your setting. They should be focused on supporting and collaborating with you to make other people’s experiences more compassionate and more productive. That is why the use of the word “advisor” is really important. There are many words that people use to label patients who are working toward transforming the health care system. Advisor is the one we use because it means collaborator, cooperator. 
 
Q: What types of hospital staff should be part of a Patient and Family Advisory Council?

In my experience, hospital staff are always part of the council and identifying which staff participate varies from organization to organization. The most important thing is that they are people of influence and power within the institution. Otherwise, the council becomes a checkbox — a nice thing that happens “after hours,” because the meetings usually take place in the evening.
 
When I was a patient and family advisor, the CEO of the hospital wasn’t on the council, but the rest of the “C-suite” was — the chief nursing officer, chief medical officer, and chief financial officer. Because of their participation on the council, when we met and problems were identified, it didn’t take weeks of other meetings to get them fixed. The issues were immediately addressed because the people in power were sitting right there and saying, “That has to stop.” Everything from disciplining an employee or people not paying attention at a reception desk as patients arrive at the hospital, to serious safety or cleanliness issues, were fixed within hours. And that is so important because, if you have to wait weeks, think of the number of patients that are having that same bad experience. It could be 60, 100, 300 patients, and that’s not right. So, people with power and influence in the organization and staff who are very closely connected to quality and safety initiatives should be on the council.

Q: What about working with health care organizations to engage patient and family advisors excites you?

The most exciting thing to me is the number of people who now believe that patient and family advisors are a norm and that they’re the future. I’m also encouraged by the numbers of people who are engaged in this work and the way that hospitals are establishing patient experience officers and making the patient experience a focal point of the way they do business. We are truly at a tipping point. Engaging patient and family advisors is affecting not just patients and families, but also doctors, nurses, and staff who are finding new meaning in their work because they are focused on their patients.

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