Trust: Willing to be Vulnerable. Worth the Investment.

Best health builds on trust – trust in people, institutions, information, and solutions. I trust my primary care doc.  I trust my chiropractor. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. Trust doesn’t mean blind following. Rather trust leads to more control or feeling more in control. I need trust when I’m in a crisis and can’t think clearly. I listen to my immediate family and my two lead docs (in that order). I’m likely to do what they recommend. Trust is for when I need to decide but can’t or don’t want to. Trust is for times of uncertainty.

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Episode Notes

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Contents with Time-Stamped Headings

to listen where you want to listen or read where you want to read (heading. time on podcast xx:xx. page # on the transcript)

Trust when uncertain 00:55. 1

Introducing Jody Platt 05:29. 2

TRUST, time, talk, control, and connection 07:37. 2

Be vulnerable. Act in my best interest 08:36. 2

Trusting myself, organizations, information 12:35. 3

Trust makes our lives easier 20:30. 4

Trust. Worth the investment. 24:45. 5

Reflections 28:31. 6

Please comments and ask questions

Credits

Music by permission from Joey van Leeuwen, New Orleans Drummer, Composer

Sponsored by Abridge

Thanks to these fine people who inspired me for this episode: Casey Quinlan, Josh Richardson, Robert Doherty, Sarah Krug, Joe Selby, Laura Zucker, Melissa Reynolds, Barry Blumenfeld, Regina Holliday

Ethical, legal, and social implications of learning health systems -Platt, J, Spector‐Bagdady, K, Platt, T, et al. Ethical, legal, and social implications of learning health systems. Learn Health Sys. 2018; 2:e10051.
Patient-Centered Clinical Decision Support Learning Network (PCCDS-LN)

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About the Show

Welcome to Health Hats, learning on the journey toward best health. I am Danny van Leeuwen, a two-legged, old, cisgender, white man with privilege, living in a food oasis, who can afford many hats and knows a little about a lot of healthcare and a lot about very little. Most people wear hats one at a time, but I wear them all at once. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all this.

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The Show

Trust when uncertain

Making my way in the awesome circus of healthcare without crumbling depends on fostering the 3 Ts and 2 Cs (trust, time, talk, control, and connection). Today, let’s talk about trust.

Best health builds on trust – trust in people, institutions, information, and solutions. I trust my primary care doc.  I trust my chiropractor. I trust my instincts. I trust my gut. I do. I trust my wife. She trusts me. Trust doesn’t mean blind following. Rather trust leads to more control or feeling more in control. I need trust when I’m in a crisis and can’t think clearly. I listen to my immediate family and my two lead docs (in that order). I’m likely to do what they recommend. Trust is for when I need to decide but can’t or don’t want to. Trust is for times of uncertainty.

People I trust said I should lose weight.  I knew I should lose weight. I lost 30 pounds eight years ago when the stars were in alignment. They were in alignment again six months ago as I started to lose the same 30 pounds again. Trust is necessary, but not sufficient. As Melissa Reynolds reminds me, you still have to do the work.

I trusted my doctors for twenty-five years as they worked me up, over and over, for cardiac issues.  Now I know I have multiple sclerosis, not heart disease, causing my flares. I’m a trusting fellow until I’m not.

Webster says trust is assured reliance on the character, ability, strength, or truth of someone or something. I think trust needs to include respect + communication + context (such as experience, bias, and the current politico-cultural winds).

I’m a privileged, old, white man.  Trust in relationships comes naturally to me.  It’s my steady state.  When I recognize trust, I nurture it — nurturing starts with being trustworthy. With doctors that I trust, I use our time together wisely. I’m prepared, I follow-through, I communicate. I feel better making choices in that bed of trust. Making choices in the swamp of distrust can be crazy making. Yet, trust in myself comes first. Ultimately, it’s my life.  I face the consequences of my decisions or lack of decisions. I trust I can adjust and make a different choice if the one I made didn’t work out. Trust.

My steady state for organizations, on the other hand, is distrust, not trust. I must experience the organization before I trust it. I rarely trust a hospital or insurance company. If I can’t know what something is going to cost before I buy it, what’s to trust?

I trust information only when I know the source well, or someone I trust vets it for me. I trust the information my wife shares with me and I trust the information on the website Cancer 101.  I know the people and the vetting processes they use.

Introducing Jody Platt

In 2018 I wrote a blog series with Dr. Jodyn Platt for the Patient-Centered Clinical Decision Support – Learning Network. Dr. Platt is an Assistant Professor at the University of Michigan Medical School. She wrote:

Trust has been defined and studied in a variety of fields – sociology, economics, business, psychology – but can generally be defined as “a willingness to be vulnerable to another for a given set of tasks.” Trust is built over time and on a foundation of agreements, expectations to fulfill those agreements, and a track record of honest efforts to meet those expectations. In interpersonal relationships between physicians and patients, the physician prioritizes the needs and health of the patient.  The patient, in turn, reveals personal information, and relies on the skill and knowledge of health care providers, and the health system more generally to treat her fairly, competently, confidentially, and without prejudice.

Let’s chat with Jody.

Health Hats: Jody Platt. It’s so good to be talking to you today. How do you introduce yourself in a social situation?

Jodyn Platt: I’m a Jody Platt. I’m on the faculty at the Department of Learning Health Sciences at the University of Michigan. I study issues related to trust and policy and learning health systems, whether that’s about information and data or algorithms and, clinical decision support. My work mostly focuses on the on the ethical, legal, and social implications of learning health systems.

TRUST, time, talk, control, and connection

Health Hats: Thinking about trust: you and I wrote a couple of blog posts about trust. You wrote the first from an academic point of view. I wrote the next from a patient’s point of view. We followed with an interaction. I learned a lot. I’ve thought that when we make decisions about uncertainty in our health, we need the three Ts and the two Cs: trust, time, talk, control and connection. I started with trust.

Jodyn Platt: The easy one!

Be vulnerable. Act in my best interest

Health Hats: Yes, the easy one. Trust, the mix of everything else, because the rest doesn’t mean much without trust. Imagine connection or talk without trust. When you and I worked together, and we worked on this blog post together, you used a definition that was a willingness to be vulnerable to another for a given set of tasks. I thought then, and I still think now, “what an unusual definition.” Unusual in the sense that it’s not about money and it also puts the onus on me.  Can you talk a little bit more about that definition?

Jodyn Platt: Sure. I have a question for you. You said it puts the onus on you. Does that mean you feel like it puts the onus on you as the person that is trusting or the person that is being trusted or both?

Health Hats: I think it highlights that trust is about a relationship and whether it’s the relationship with an individual, an organization, or information, it puts me square in the center, and I have to think about that it’s a two-way street.  It isn’t that somebody is trustworthy and that’s the end of it. It’s dynamic.

Jodyn Platt: I’m glad that you said that. It’s where I usually start with an understanding that it’s the reliance on another human being. That implies a relationship, dynamism, a back and forth. That there’s a relationship happening between the person who’s trusting and then whatever it is that they, or whoever they’re choosing to trust or not trust. It also puts some level of autonomy on the person that’s trusting because I can empower. I can choose to trust you or not trust you. That’s one place to start. The second is a willingness to say, “Yes, I trust you.” To be vulnerable. So, there’s something at risk here. I’m asking you to put my interests at least equal or above your own, and that you will act in my best interest. Which also goes against a lot of things where we assume people are self-interested or they’re not there to help you. So trusting is about asking somebody else to put that aside for a moment and put your needs first. For whatever reason, you can’t do it all on your own. There a lot in the world that we can’t do on our own. So, we have to trust all kinds of people out there to get through the day. It’s a willingness to be vulnerable to somebody else, but also as the world gets bigger, a system, a health system, a set of processes and technology. But there’s another entity out there whom I’m choosing to trust, their willingness to be vulnerable to another, for a given set of tasks. Again, there’s a time limit around these relationships. We revisit trust. Trust is hoping for the best, but also knowing that there’s a risk involved, that things might not go well, but you can have a certain amount of faith that that other person has acted in good faith.

Trusting myself, organizations, information

Health Hats: There’s also trust in myself and trust in myself to recognize that it isn’t going the way I hoped, and I can adjust. Do you think that this business of trust in people is rational, can be nurtured, and is more recoverable as opposed to trusting in an organization? I’m this pathologically optimistic person, so I start with a position of trust. As opposed to organizations where I feel like I start from a position of distrust and it’s a lot harder for me to trust in an organization. I don’t feel as confident in my intuition, my gut, my whatever. It seems different. When when you get to trust and information, which is where you and I started talking about this a year and a half ago: trust in health data and clinical decision tools and all the technology that went into that. So why do they seem so different?

Jodyn Platt: One reason could be trust in humans. You talked about trust in yourself. You as a human, can relate to yourself. So, there’s some humanity on which to base trust. We two humans can communicate quite freely. You and I can develop a relationship and negotiate that relationship. We can understand both the boundaries of trust, but also understand that if things go wrong, we’ll be there to repair that. So, trust in a human or somebody that can shake your hand is much simpler than trust in an organization where you’re relying on other information, secondhand knowledge. It’s very easy as things get bigger and bigger to lose the human face to it. I think that’s one reason why it’s harder to trust in an organization — the same with technology. Technology is even further removed from that human face than an organization because you don’t see people behind the information that you’re given or understand their motives. If you don’t understand their motives, you can’t assume that their motives are to help me as a person.

Health Hats: So, then that’s getting to control where, right or wrong, I feel like I have more control in a relationship with a human, and so I’m more likely to trust than an organization. I’m a privileged old white man and my steady state is to trust. I don’t know how usual that is. There’s plenty of people that don’t start from a steady state of trust. People build trust, find trust. What’s that about? How do people recognize trustworthiness? For me, it’s my gut. Somebody walks into the room and I think, “man, I don’t trust that person.” I don’t know if it’s an inherent bias, negative experience with something. Can you say something about that feature of trustworthiness? How do people find it?

Jodyn Platt: I see what you’re saying. How do you build trust, or how do you decide to come to a place where you decide you can trust, particularly if you’re coming from the point of skepticism or doubt? Some of it comes from experience. If I say I trust you to pick up my kids at three o’clock every day, the first day I might be quite nervous about that. I might not know you very well. My children might not know you very well. I don’t know if you’ll come on time. So, the first day might be very hard, but I see that you do it well, and everybody’s happy when I come home at five. That’s part of the trust-building process -providing some of that follow through. The longer that happens, the easier it becomes. If there’s a day when you call and say, “I can’t come today. I’m sorry.” It’s the last minute. I might still trust you to come the following day or the next week still. So, there’s room for error. The longer you have a relationship and the more you’ve been able to show your ability to perform that given set of tasks. Time and experience build trust. When you’re talking about organizations, can that organization deliver something they’ve promised whether that’s explicitly or tacitly?

Health Hats: If I think about an organization that I trust, I trust PCORI, the Patient-Centered Outcomes Research Institute. I trust them because I’ve worked with them for 12 years. They respect and use the input from me that they ask for, and I’ve seen that they’re a learning organization. Those make me feel like it’s a trustworthy organization. I don’t know many organizations I feel that about.

Jodyn Platt: It’s hard for organizations to achieve that level of trust. Some that do it better than others.

Now a word about our sponsor, ABRIDGE.

I trust ABRIDGE. I trust that they protect my personal data. Push the big pink button and record the conversation with your doctor. Read the transcript or listen to clips when you get home. Check out the app at abridge.com or download it on the Apple App Store or Google Play Store. Record your health care conversations. Let me know how it went!” 

Trust makes our lives easier

I asked Jody how her understanding of trust changed over the eight years she’s studied it.

Jodyn Platt: When I first started this, I got a lot of questions about whether trust matters. Do we really care about that and can we measure it, and does it matter? I think the answer is yes; it does. I’ve learned that yes, it does matter. It can be measured. It can be assessed. It can be talked about.  It can be interrogated.

Health Hats: Interrogated? People can ask questions about it?

Jodyn Platt: People can ask questions and inquire and dig into it and pull it apart and get at the heart of what’s at stake. It matters. It predicts all kinds of things about comfort with data sharing. The other thing I’ve learned is that trust ultimately makes our lives so much easier. Take the pickup of my kids’ example. Not only is there somebody there to pick up your kids from school, but you don’t have to call them six times to make sure they’re coming. You don’t have to do it yourself, but if you can ask for help and trust that that help is coming. Then that’s one less thing that you have to worry about. So, you know, trust is about making our lives simpler.

Health Hats: I can see from the advocacy community stories of when people don’t trust. They’re nightmares because people are already sick, and then they’re protecting themselves. In my view of health, one of the most important things is to manage manageable stress.  When you don’t trust, that is a lot of stress and it makes it harder to heal or manage if something’s chronic and not going to heal. That makes sense to me. I’m a pretty activated patient and I cannot tell you how much I don’t want to research what I should do. I’m about my basic habits. That’s where I put my effort. Since I trust my primary care doctor, my neurologist, my chiropractor, when they recommend something, unless it doesn’t smell right, I just do it. It’s so much easier. I can’t figure all this out. It’s just too much. So, I do appreciate that. I’m trying to think about what’s changed for me. When I was eight, I used to read at night, and I would read under the covers. I would use a lamp and I would put the lamp against a mattress. One night I started my mattress on fire. I got up and went to the bathroom and got water and put the fire out. Then my father comes in smelling this smoke asking, ‘what’s going on?’ I told him I had no idea what was going on. He was so pissed at me. “You think I’m that stupid?” But after everything settled, we talked. It was the first time I ever heard about trust. He said, “look, trust is priceless, and I don’t trust you now. That’s what’s bad about this.” Well, this was my dad, and in another month or so, we’re over it. But it made me appreciate how important trust was. Even at eight, it made sense.

Trust. Worth the investment.

If I was going to make one or two points about trust for my readers, my listeners, what do you think I should emphasize?

Jodyn Platt: We’d start with trust matters. It’s worth an investment upfront. It takes time and patience. What do you say to the person who is not as activated as you are who walks into the healthcare system and is worried about bills and adding to them? And worried about misinformation and in a case where that bridge is hopefully not too far gone, there are good reasons why there’s a lack of trust. You can try to reach out for help from others who you do trust so that you have at least that network. Start with the person that you can find in that organization; even if the organization isn’t doing it for you, there are people in there.

Health Hats: You’ve said two things to me that are interesting. The first one is to invest. That’s where we started: what’s my responsibility? Why do I trust my primary care physician? First, she did the work of figuring out what was wrong with me. I kept getting these cardiac diagnoses. And it wasn’t. She dogged it till it was definitive. That was a great start. Then she cares about what’s important to me. Now I make sure that my precious time with her is well used. I come prepared, and when she recommends stuff, I do it. And if I don’t, I let her know that I’m not doing it. That’s my part of being worthy of trust. I want her to trust me. The other thing that interests me about what said is finding people that you trust. When I was an ICU manager, I found it curious how often the person that they trusted that family and patients trusted the most first were housekeepers. The housekeeper had no agenda. They were so nice. When the housekeeper would say, “You should ask the nurse,” they would ask the nurse. That would be this threshold that sometimes wasn’t there. I found that amazing.

Jodyn Platt: It is amazing. I mean, the healthcare system is a whole world and country and culture unto itself. And the fact that most of us, as regular people, not a part of it, don’t understand it, shouldn’t be as surprising as sometimes I think it is, but it is. We don’t even know who to call if a doctor says, call me in the morning. That’s great, but do I call this 1-800-NUMBER? Even knowing how to do very simple things suddenly gets taken away from you in the context of a hospital or healthcare setting.

Health Hats: Well, thank you. Thank you. I appreciate this conversation and that you are so willing on one day’s notice to spend a few minutes with me.

Reflections

I started this episode thinking; I need a short on-mic episode (just me, no interview, less editing). I have family in town and my time is short this week. Why did I pick trust as a topic? Who writes 400 words about trust? I started writing, then I thought, how can I do this without Jody Platt? I learned so much about the concept of trust from Dr. Platt. So, another episode that’s not short, rather 16 to 20 hours in the making.

Today, I’ve learned more from Jody than I knew before. The conversation made me wonder about my own trustworthiness. First, the lessons learned today: I crave trust. I am willing to be vulnerable.  I accept my power to put myself in someone else’s hands and take the risk that they will put my well-being above their interests. Did I really say that!? It’s almost more than I can swallow. I trust my wife most, but I know what she considers her self-interest to be my well-being. I trust my PCP because she’s up-front about her self-interest: referring pressures, time, insurance, and practice constraints. We consider those pressures and constraints as we make decisions together. Trust does make life easier and simpler. That’s a no-brainer. The implication, though, is to seek, nurture, and offer that trust mindfully at specific times under specific circumstances. I prioritize trust. It’s worth the investment. That’s a good segue to the second reflection: my trustworthiness as a person, a patient, and an activist. As a person I strive to put my family’s interests ahead of my own. Putting their interest first is easiest for me most of the time and hardest some of the time. But, that’s another conversation. I spoke about trustworthiness as a patient earlier in this episode. My professional partners can trust that I will listen, communicate with them, do my homework, and follow through using daily practice of good habits. Again, most of the time. As an activist and podcaster, you can trust that I will respect you – most of the time – meaning continuing to hone my listening skills and accessibility to me and my offerings. You can trust that I will do the work we agree upon and that I will vet resources shared and connections made. But I am human, and I have a head of steam. I can be thoughtless. Listening and activism involve inherent tension. You can trust that I will transparently share my fallibility and those tensions. Immersion in trust sustains me. I have no better investment.

Danny van Leeuwen

Danny van Leeuwen

Patient/Caregiver activist empowering people as they travel toward best health

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