In Episode 16 of Butterfly Arose I used my personal experiences as a patient partner volunteer to talk about the value of Person and Family Centered Care from the patient and family perspective. But PFCC is a process of system improvement, and that means the staff of a health care organization must also be intimately involved.
In my experience, there are broadly three aspects of a specific healthcare organization that are important to making improvements in how they deliver care.
One of them is the people who work directly in patient care. This includes doctors, nurses, nurses’ aides, and environmental and food services workers among many other occupations. They have both knowledge and experience of directly caring for people in medical facilities.
The second aspect is those who are responsible for organizing, funding and keeping the system itself healthy. This includes, among many other occupations, the leaders who are responsible for the organization at the most complex level, or what we often call the "top" leadership. It also includes those who track the finances, who hire and train other employees, especially people whose jobs bring them into direct contact with patients and their families, and it includes people who uphold an organizations' core principles in terms of holding people accountable. They have direct knowledge of the laws medical organizations work within and the practical constraints they face.
Today, I'll talk about the third group, the Person and Family Centered Care staff. These are the employees who find patients and their family members who are willing to become volunteers. It also includes those who interact with patients and family members to correct mistakes, internal or external organizational change consultants, and those who act as intermediaries between medical and administrative staff and patient partners.
My own involvement began part way through my two and a half or so years as a patient partner volunteer, when the manager of PFCC asked me to help create a new employee role. She was building a team to make the Person and Family Centered Care work more successful and already had two other people on the team. The role she asked me to help her create was called the Member Mentor and Partnership Coordinator.
The purpose was two-fold. One was to recruit, train and mentor other patient partners, to help them be effective in bringing the patient and family perspective into improvement projects. The other was to work with the organizations' staff to help them understand how patients could help make improvements more successful in the long run, and to help them incorporate the patient voice more efficiently given their very real time constraints. All four people on the team of course helped with these aspects in different ways.
So, what do I mean when I say that we trained people to be effective as patient partners? Why would they need training to give their opinions about the care they received?
Anyone can help improve a medical care organization. It might be as simple as giving your opinion on a survey. These come in many forms, both online and in paper surveys. The only training you receive is simple instructions on how to fill out the form and how to send it in. Most of them ask you to rate your experience receiving care on a scale of 1-5 or 1-10. But often, they also have comment boxes where you can expand on why you picked a specific number.
Surveys, when well done, can give a sense of patient experience in specific areas of care, and can be representative of a large percentage of a group of patient experiences. But they don't allow much room for nuance, or context, both of which are very important once you go beyond the level of very simple changes. And they only help us in so far as the questions on the surveys reflect patient experience according to what patients care about. The specific things we measure partly define the context we look at. And what we don't measure gets left out.
Working with actual patients in person or in online meetings is important because it gives more nance and context to patient experiences with care, and some forms of it can give feedback more quickly than surveys can. And with more context we can discover things we haven't thought to measure in surveys. We potentially change what questions we ask or the way in which we ask them. Both surveys and in person conversations are needed.
When inviting patients into person and family centered care improvement projects, a different kind of training is needed. Why? Because we are all human with tendencies that can both help and hurt the development of mutual understanding. For example, in comment boxes on surveys patients sometimes write very thoughtful critiques. There are also times when they write harshly or call people names. Such negative outbursts in person-to-person meetings get in the way of mutual understanding, but when put into a survey comment box, their effect can be buffered by the person who collates the information to get sent to the staff.
Training for meetings where people see and hear each other including online meetings, don't have any such buffers. And we needed our patient partners to have a base level of knowledge and agreement on ground rules we use to avoid avoidable misunderstandings.
At the same time, they need a basic level of understanding of the physical and organizational realities within which change takes place.
For that reason, our trainings covered these areas:
We explained what the organization is, how it is organized and the basic way it works. We also talked about some of the constraints medical and administrative workers face that affect how change can happen. Among these are the nature of the specific organization, whether nonprofit, for profit, local, regional or national in scope. We also explained the main specific ways the organization involves patients in system improvements, and the characteristics of each one.
These three are practical things that matter if we are going to come up with changes that are possible given the current environment. For example, Kaiser hospitals and health care plan where I worked are a nonprofit that works in collaboration with the Permanente Federation, which is not a nonprofit but has no outside investors. In addition, it is the most highly unionized healthcare system in America. The constraints we lived under are very different than the ones faced by people who work for a company that is nonprofit but not highly unionized, or one that is for profit. These facts matter.
Other areas of training are based more on building trust.
Everyone in American medicine is required to obey the HIPAA regulations. This is the acronym for the Health Insurance Portability and Accountability Act. A very important aspect of this law is to protect the confidentiality of our medical history as patients. If people are not confident that others won't talk about their personal situation outside the PFCC meetings, they will be less likely to bring their full experience to bear on the improvement project.
We never have any version of perfect information, but the more barriers we remove that can hinder people from speaking openly about what they know that is pertinent to solving a problem or making a system improvement, the more likely we are to make changes that will last and that will work for the largest percentage of people involved.
Aligned with HIPAA rules are confidentiality requirements that protect the medical staff and the organization they work for. If we want doctors, nurses and other staff to be honest about their experiences, they also need to have confidence that the things they say in meetings will not be broadcast publicly.
But there is one other area that is hard to train people for. That is, how to act in meetings where there will be a variety of people with both similar, and sometimes very different, experiences and different ways of mentally organizing their experiences into coherent stories. Situations when feelings arise in us like embarrassment or that our self-image of being decent, competent human beings feels like it is under threat.
One of the places I learned about this was from the work of Chris Argyris, a researcher and practitioner of organizational change. You can learn about his work and conclusions in more detail from the second edition of his book On Organizational Learning. In this book, among other things, he talks about how we humans have creative ways to defend ourselves against feeling inadequate or believing we will be seen that way by other people or the system we are part of.
We hold both espoused theories and theories in use, as he calls them. Espoused theories are things we say openly; what we tell other people we believe about our values and how to act in the world. In addition to our personal theories, the groups or organizations we are part of also have publicly espoused beliefs about the values people are expected to live by and how people should act.
But, Argyris argues, we and our organizations also have what he calls theories in use, those we act on but don't disclose to others.
This matters in organizational change, because often we end up acting according to our quietly held beliefs in ways that go against our publicly stated beliefs. This can, and often does, lead to either preventing changes from happening or making changes that don’t last. These quietly held theories or beliefs we enact have a purpose. That is to protect us individually in some way. It could be from embarrassment, from looking incompetent, for example, or believing others see us as incompetent. We also think they protect whatever is the current organizational structure from falling apart in the short term.
An important aspect of our training for new patient partners was having a conversation about what many call unconscious bias. Psychology Today describes bias as
"...a tendency, inclination, or prejudice toward or against something or someone. Some biases are positive and helpful—like choosing to only eat foods that are considered healthy or staying away from someone who has knowingly caused harm. But biases are often based on stereotypes, rather than actual knowledge of an individual or circumstance. Whether positive or negative, such cognitive shortcuts can result in prejudgments that lead to rash decisions or discriminatory practices."
I personally have a concern about using the word "bias" because in my experience the thought that comes to mind for most people when they hear this word is very negative. It can sound to many people that you are talking about bad people when using the word "bias." In fact, social scientists mean this to be a descriptive term. And their research tells them it is something we cannot do without.
It happens because our minds are unable to consciously attend in the moment to every input our senses send to our minds. There's just too much information. We slowly learn how to act in specific situations over time. As we experience success and failure when we act, our minds create models that match our experience on a subconscious level. Those models highlight discrete facts or groupings of facts. When we sense those facts, it triggers actions based on the unconscious model.
Think about learning a new physical skill like riding a bicycle. At first, we are incompetent at it. The bicycle's front wheel turns erratically to the left and right. We may fall over repeatedly unless there are training wheels attached.
Over time, as we practice using our muscles to control the bicycle,
we become competent at riding it. We are not consciously aware of what our bodies are doing the vast majority of the time, when in fact we can't be. There is too much information.
If we then decide to become competitive bicycle racers, we have to go through a whole new, and more complicated, learning process. We will become less competent for a while, until our minds change, and then we become competent again.
We use a similar process to learn how to interact with other people, and how to be successful as individuals in an organization. We learn from a young age how to interact, but that includes adults who are imperfect, who sometimes say one thing and do another. Our young minds notice both. Over time we learn that there are ways you explain what you believe in public, and ways you act to protect yourself from harm or loss in some way that you don't say in public. Because the adults around us are doing both.
As you enter the larger society in school, volunteer or paid positions and different community groups, you take in what the rules are on both levels. And you try to be what others think of as a good member of the group. This can produce both positive and negative outcomes depending on the circumstances.
These unconscious beliefs and the action routines they trigger can lead us into unproductive conflict or cause people to hide information. We don't do these things because we are bad people, we do them because we are trying to be successful. If we want to help create real change, to improve our healthcare provider organization, it is important to know when we might be acting on these unconscious routines, and to be aware of the times when they are creating mistakes. We need to interrupt ourselves and do something different.
As we onboarded new patient partners, we had to find a way to help people become more aware of how these unconscious routines might come up and do it in a way that didn't sound like we were making them out to be bad people. To do this, we used a combination of stories and a simple video we found. The main point of the video is exactly what I described above. You can watch it by following the link I provide in the wording for this episode on my website.
We used four-hour meetings in person or, during COVID online, for the trainings. A significant portion was devoted to building awareness through storytelling and inviting conversations. This included inviting everyone to introduce themselves at the beginning of the meeting. Two of us employees would model doing that, telling the group about ourselves from both a professional and personal perspective. We hoped this would create conditions where our new patient partners were comfortable doing the same.
We also used stories of particular patient partner experiences throughout the four hours of the meeting. By the time we got to the unconscious bias video, we hoped this would make it easier for them to think about and talk about the contents of the video and what it might mean for their future in volunteering with us. And of course, we used open ended questions to invite a conversation about the video.
This process of normalizing storytelling to invite thoughtful conversations began even before people got to the class. One of the things I would do as I began to get to know them in early telephone and online conversations was to help them think about how their lives and experiences might both help and hinder them in this role. For example, we might have a potential patient partner with professional experience and training that required knowledge of meeting facilitation. I would note the importance of those skills because we need for everyone, not just the facilitator, to act in helpful ways as the meeting goes on.
But I had an experience when I was a patient partner of participating in a day-long improvement project. At the beginning, I told them, the person responsible for organizing the meeting and the person acting as the facilitator were having a disagreement about what exact process to use. I was a trained facilitator and mediator I said, and
"I could feel my facilitator hat creeping up to the top of my head with several ideas about the best process to use, but I paused, took a breath, and reminded myself that they were smart people who could figure this out, and if they needed help, they could ask us. What I brought into the room that was vital to our success in coming up with changes was my direct experience as a patient."
I then asked them what their thoughts were as they listened to my story. This almost always led to thoughtful responses, and a deeper conversation about the patient partner role. While we also talked about the factual details of what they would be doing, I think this was vital in making it more likely they could be effective as patient partners.
Throughout their onboarding we were:
Giving them factual information important to the role;
Letting them know what the stated guidelines were for how to interact in this role;
And using storytelling to open conversations in a way that was in alignment with those guidelines.
After a few months in this role working on the PFCC staff I also developed a simple class with practice in telling stories. Sometimes you are in a meeting that is packed for work to do. You have a relevant experience, but not much time to talk about it. My class was about how to tell a story in 3 minutes or less where the other person gets a sense of what it was like to walk in your shoes.
We employees on the PFCC staff were not people who devoted their lives to creating and using organizational change theories like Chris Argyris, and I don't think we needed to be that person. What we needed to do was to act in ways, as best we could, that were aligned with the learnings of people like him.
Ways of speaking and acting that were aimed at learning how to support our health care organization to make improvements that work for patients and staff. And in ways that were aligned with what we hoped would help our new patient partners be successful in their roles.
This, in my belief, is more complex than what I am saying in this episode, and in the next one I will have more to say about the complications of being active change agents outside of a research environment.
And to be honest, researching, writing and thinking about this whole series on sex, sexuality and gender identity has opened new horizons for me in a variety of ways. Among other things, I am drawn to questions around what do we know about what is innate in us a human beings? What are some things we think we know and what further questions might this raise? And is there a way in which all this learning can help us improve how medical care is delivered in America in practice?
Thank you for listening. As always, I hope you will send me your thoughts or reflections on my podcasts.
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