Connecting with Health Care Consumers to Drive Meaningful Change

(This is an unedited transcript. For accurate quotes and presentations, please refer to the full-event video.)

Dr. Isaacs:

We deliver healthcare, and we will continue to adapt. Policymakers are also adapting, and should continue to revise laws and regulations. Our lives are vastly different today, and we all must do our part to help the healthcare ecosystem meet the needs of patients during this pandemic. Thank you very much.

Dr. Isaacs:

Hi, I’m Dr. Rich Isaacs. I’m the CEO of the Permanente Medical Group. COVID-19 has had a massive and devastating human and economic toll this year. At the same time, it has accelerated a technology transformation that will have profound and positive impacts on health care delivery. Early in the pandemic, TPMG physicians realized that the new normal for many patient visits would have to be virtual. Fortunately, we were well-prepared for this moment. With TPMGs video care first strategy, for example, we transformed care delivery in just a few weeks. Our physicians have conducted more than 2.5 million video visits this year compared to approximately 100,000 in all of 2019.

Dr. Isaacs:

The Permanente Medical Groups understand that the future is now. We have changed the way we deliver healthcare, and we will continue to adapt. Policymakers are also adapting and should continue to revise laws and regulations. Our lives are vastly different today, and we almost do our part to help the healthcare ecosystem meet the needs of patients during this pandemic. Thank you very much.

Kathryn M.:

Hello, and thank you for joining the second session in the Alliances at 2020 Signature Series Summit, Voice of the Patient. I am Kathryn Martucci, Director of Policy and Programs for the Alliance for health policy. For listeners who are new to the Alliance, welcome. We are a non-partisan resource for the health policy community dedicated to advancing knowledge and understanding of health policy issues. Throughout the three day event, we will study how the patient voice is collected, how it supports shared decision-making and how it is leveraged in policy translation efforts, all to improve patient experience and build healthier futures. I want to take a moment to thank our 2020 signature series sponsors. We appreciate their support and making this happen, and you can join the conversation on Twitter using the hashtag #AHPSummit20 and follow us at All Health Policy.

Kathryn M.:

We want you all to be active participants. So please get your questions ready, you know how you do it. You should see a dashboard at the bottom of your screen with some icons. You can use the two speech [inaudible 00:03:05] icon labeled Q&A to submit questions you have for the panelists at any time. We will be collecting these and addressing them throughout the broadcast. You can also use that Q&A icon to submit any technical issues you may be having.

Kathryn M.:

And finally, please feel free to check out our website, allhealthpolicy.org for some background materials, including speaker bios, resources list, and an experts list, and recordings of completed sessions will be made available there soon. And now I’m so pleased to introduce our moderator for today’s discussion Ms. Kristen Sloan. Ms. Sloan is Managing Director of Public Policy at the American Cancer Society Cancer Action Network. In this role, Ms. Sloan leads the Cancer Action Networks Policy work in support of the organization’s expensive federal state and local advocacy agendas. Ms. Sloan is also a board member for the Alliance for Health Policy. So thank you so much for joining us today. I will turn it over to you.

Kristen Sloan:

Actively look at shared decision-making from the patient and the caregiver perspective. We want to elevate that patient voice in the healthcare system, from the design of a system to the delivery of services. Now, I am pleased to introduce a very distinguished panel today, and they’re going to be answering some questions that we have. So let me start with Karen [inaudible 00:04:50] Marshall, who is Director of Advocacy and Engagement for the National Alliance for Caregiving. Alayna Tillman, who is an excellent patient advocate with the Camden Coalition Consumer Scholar Program. Mark Humowiecki, who is the Senior Director and General Counsel for the National Center for Complex Health and Social Needs at the Camden Coalition for Healthcare Providers. And finally, well-known to all of us, Andrew Imparato, who is the Executive Director of Disability Rights California.

Kristen Sloan:

Welcome to each of you. We’re so glad you could join us today. So we’re going to get started with a question for the entire panel. And Karen, I’m going to start with you. And the question is, if you were designing a new healthcare system, and I think the pandemic right now is making all of us think about how we redesign a healthcare system, if you had that ability to redesign the healthcare system, from the patient perspective what would that new system look like?

Karen Marshall:

[inaudible 00:06:01]. Again, I’m with the National Alliance for Caregiving, where we work to build partnerships and research advocacy and innovation to help make life better for family caregivers. So I think I can best serve that question from our perspective and includes the over 53 million family and friend caregivers in the U.S., who support the patient community. And families, patients, and their families and their caregivers want to experience their [inaudible 00:06:25] health. So any new system would obviously, from our perspective and from my own perspective, as both someone who’s been a patient more frequently, a caregiver, have a system that helps support that need. So patients and their families of choice with [inaudible 00:06:46] system, as experts in their lived experience. That way they feel empowered to actually be able to participate in decision-making, doesn’t necessarily occur to most people that healthcare can be as experienced as a participatory experience.

Karen Marshall:

They want to see that their quality and cultural values are prioritized and have less emphasis and less worry about the cost of the care that they receive. The care that they receive would look and sound like them. They would see people in healthcare workforce, health care professionals reflect the diversity of their communities. And in very practical terms, be able to translate to them, be able to speak to them in their preferred languages, including being able to communicate medical jargon to them in ways that they don’t understand, and placing the focus more so on family caregivers and what that side of the health [inaudible 00:07:45] would like to see from this new system.

Karen Marshall:

What we’ve seen is that caregivers who do not care for themselves may become unavailable to care for others, and caregivers for their own financial health and wellness needs which often begs the question, who will care for the caregivers, because I think by now, most of us in these types of spaces are aware of the long-term impacts of care strain and burden. So any [inaudible 00:08:13] take that into consideration and be able to provide support such as medication management [inaudible 00:08:22] care. Those are the types of things that through our research we’ve heard the caregiver would like have more support about so that they can help the people that they care for and make it more active healthcare system.

Kristen Sloan:

You are a patient advocate, I [inaudible 00:08:41] have your own experience with the healthcare system, but you often hear from other patients as well. Given that knowledge, how would you redesign the healthcare system?

Alayna Tillman:

Well, one thing I think I would do is to begin with the practitioners. Often times now the system supports the acute care hospitals, but many times families, especially those that I deal with, they don’t go to the hospitals. Their loved ones have needs that can be taken care of at home, but nobody supporting them. So organizations such as the one that Karen is part of and the one that I’m part of with the Los Angeles Caregiver Research Center, they’re our support, but we need to have the practitioners part of those organizations. So they understand what the families go through, what the families need and what the families find missing.

Alayna Tillman:

And as Karen mentioned, the family and the caregivers want to be [inaudible 00:09:41] to be valued. Oftentimes practitioners will say, “Okay, I’ve been in medical school,” but we are the ones who are there 24/7. And we’re the ones that can really show them what it is our loved ones are saying. And hopefully, we come educated so that we don’t waste the practitioner’s time, but we can give them observations that they can take and incorporate in the care plan that they are going to work with along with the family. And so [inaudible 00:10:16] we love to see.

Kristen Sloan:

Terrific, that’s a terrific answer. I’m actually going to come back to you with a follow up that’s related to that, but Andy, let me turn to you as a representative of the disabled community, how would you redesign the healthcare system?

Andy Imparato:

Well I used to work for Senator Tom Harkin from Iowa, and one of the things that he used to say, I don’t think he made this up, but he used to say that, “We don’t have a healthcare system, we have sick care system.” And what he meant by that is we have a system that’s designed around diagnosis and treatment, but it’s not always designed on helping people live the best possible life and avoid unnecessary interactions with the healthcare system.

Andy Imparato:

So if I just think about my own personal experience as a young law student, I had my first serious episode of depression ended up getting diagnosed with bipolar disorder, and the way that I’ve navigated my disease or my condition over the last 30 years has not been heavy reliance on the health care system. It’s been kind of getting to know the Disability Rights Movement working in that movement, understanding that my disability is a natural part of the human experience and not an inherently negative thing.

Andy Imparato:

And I’ve developed pride in my identity as a person with a psychiatric disability. And I’ve been able to use that as a professional. None of that did I get from the healthcare system. In the health care system I got diagnosis, got a version of treatment, and I got discouragement from being open with my condition, the professionals I saw did not want me to be open with my condition because I thought it would be used against me. And I think that failure on the part of the healthcare system contributes to the stigma that so many people with mental illness and other conditions still experience. So I’m looking for a more holistic system that understands that disability and chronic health conditions are a natural part of the human experience. And that those of us who have those conditions need to learn how to navigate our conditions and live our full lives and not accept artificial limitations on what we can accomplish.

Kristen Sloan:

Thank you. And Mark, last but not least, Camden Coalition is actually undertaking some projects for redesigning the healthcare system. Can you talk about those for a few minutes?

Mark H.:

Sure. And I really appreciate the comments that came before me. I think Andy’s point about not being a sick care system but really trying to play a supportive role for people whose lives may involve a variety of complex means. But who are in charge of their lives and live to their fullest. That’s how we think about redesign of the healthcare system. We’re leading both locally in Camden New Jersey and nationally through our National Center for Complex Health and Social Needs, creating the development of complex care as a practice. And that is the principles of being person-centered, team-based, cross-sector, which means it’s not just about healthcare delivery, but it’s about all the community support [inaudible 00:13:44] in order to live healthy and good lives.

Mark H.:

It’s about equity, which hopefully, we’ll talk some more about today, and it’s about being data-driven. And so when we think about reshaping the healthcare system, it really is about the healthcare system playing a role, but not necessarily the primary role in helping people to live healthier lives and providing supports for people so that they are able to navigate what has become very complex systems and be able to get the resources and supports they need to be able to pursue their goals.

Kristen Sloan:

That’s great. Thank you. Alayna, you had touched on the topic of providers, which I think is really critical when we’re talking about changing the way that patients engage with the system. What do you see as some of the greatest challenges of getting healthcare practitioners, whether it’s a doctor or a nurse or social worker to see or/and accept the patient as a decision-maker in their own care. And then I’m going to ask the rest of you to jump in on this as well.

Alayna Tillman:

Well, for me it started with, I went into [inaudible 00:15:01] office one day and I said I don’t feel good. And she’s like, “Don’t ever come in that way again.” And she said, “You need to come and tell me what’s going on.” And I’ve found that over the years when I changed [inaudible 00:15:15], that started going in that way, they listened to me. Like I said, the insurance industry dictates how many minutes the doctor can spend with you, and my practitioners now, one’s that I also use with my relative, were also like, I asked [inaudible 00:15:35], “When I come in that way, does it help?” And they said, yes, because allows them to spend as many of those minutes looking at what’s going on and what they need, as opposed to getting me to go back and forth, come on and explain it.

Alayna Tillman:

And so for us in my family and those that I share it with, go in with the questions, go in with the observations. And after a while, the doctors began to expect that when I came in and said something was happening, they could listen to that. And I think that’s the thing for most practitioners, also support for them. Organizations, like I said, even ones that I deal with, they offer training for practitioners. And that’s been, I think, a real help too, because they’re not lost. They’re not floating out there as to, what is it that they need to do to help their families more? And so that has been, like I said, when I asked him about it, every so often I asked him, “Is this working?” They reassure me that it is working. And like I said, I passed it on to others. And they’re finding that they’re listened to a lot more.

Kristen Sloan:

How to stand up for themselves, but also some training for petitioners in terms of how to listen and how to elicit responses from consumers and patients?

Alayna Tillman:

Yes. I think the hospitals have more support. The hospital associations all kind of do that. And also, they turn to the social workers, to the case managers. Well, a practitioner’s office it may have a single nurse and maybe an aid, doesn’t have that person they can turn to. Giving them those tools that they can take, especially in small practices, I think makes a big difference.

Kristen Sloan:

[inaudible 00:17:38] in terms of helping patients direct care, what are your thoughts on this?

Karen Marshall:

I actually just echo everything that Alayna just said about the need for validation and supports for the lived experience. So caregivers have their own valuable observations that aren’t necessarily interchangeable with the patient. Sometimes patients and caregivers are lumped in the same category when medical professionals talk about us and oftentimes their observations are quite distinct, but they’re very complimentary. And caregivers getting support and understanding the roles that they can play, whether or not it is a proxy, if they’re communicating for a loved one or someone that they’re caring from, who’s not able to articulate their own lived experience. Caregivers need to have some guidance and support in how, as Alayna said, to be able to get to what the issue is and make the best use of the time with healthcare practitioners.

Kristen Sloan:

That’s great. Thank you very much. Andy, I’d like to ask you, given your extensive experience to jump in on this question, in terms of the greatest challenges for patients to be seen as an active participant in the decision-making process?

Andy Imparato:

Well, I guess I would say one of the most significant challenges is a lack of exposure on the part of clinicians to a disability rights philosophy, or to kind of a deep understanding of the life experience of people with disabilities. Oftentimes they learn about the biology of the condition, but they don’t learn about all the things that happen in people’s lives as they’ve lived their lives with disability. And so I’ll just point to an example of a good program that I would say is sort of a solution here. The health resource administration finds a program, Leadership Education in Neurodevelopmental and Related Disabilities, or LEND is the acronym. And these are thousands of clinicians across multiple disciplines who are learning to work with children and youth with developmental disabilities, with a lot of emphasis on folks on the autism spectrum and their families.

Andy Imparato:

And they’re learning interdisciplinary teams. They’re learning how to lead interdisciplinary teams. They’re learning how to work directly with families and with children and youth on autism spectrum. Some of the trainees who are doing the training with them are on the autism spectrum. So they’re also learning from people with lived experience, and they’re learning that if they’re going to be [inaudible 00:20:22] in this space as clinicians, they have to care about policy and they have to engage on policy and systems level of [inaudible 00:20:29]. And I feel like that kind of training is what we need in order for clinicians to understand how to share power with people with lived experience.

Kristen Sloan:

[inaudible 00:20:41], it sounds you’re describing training both through medical schools well as continued education for physicians and nurses that include patients and patient perspective?

Andy Imparato:

Absolutely, absolutely. It does need to happen in medical schools and in pre-med programs, but definitely should tenure as part of ongoing clinical education.

Kristen Sloan:

And Mark at the Camden Coalition, what specific steps are you all taking to assure that patients actually have that voice?

Mark H.:

Yeah. So [inaudible 00:21:19] a little bit of what Andy just described. Our national center just went through a process of having an expert [inaudible 00:21:28] develop a set of core competencies for the practice of complex care. So these are the knowledge skills and abilities that practitioners, from doctors to community health workers and peers all need to have to deliver quality care to people with complex needs. And the process of developing those core competencies over a year, included four people on a panel of 15 who identified as having lived experience with complex needs.

Mark H.:

And so the very question of the competencies [inaudible 00:22:03] described abilities [inaudible 00:22:09] is just one way that we have tried to bring the patient voice to the very places where the infrastructure of healthcare is being defined or redefined. So we had a vice chair for lived experience, and we made story and people’s stories of receiving care and their own recovery. A lot of people who were involved had been homeless or faced addiction. What was transformative to them, which like Andy pointed out, is not always receiving services from a healthcare provider, but can be lots of different elements. But how can healthcare care providers build on or strengthen or make opportunities for people to have those experiences and to get the things that they need?

Kristen Sloan:

Thank you, Mark. We are starting to get-

Andy Imparato:

[inaudible 00:23:05].

Kristen Sloan:

Hold that thought, Andy. I’m coming right to you. We are starting to get questions from the audience, which is fantastic. Please keep those questions coming. Andy, one of our first questions was for you, could you clarify your HERSA reference and example?

Andy Imparato:

Sure. And then I wanted to make a brief comment on what Mark said. so again, it hurts the health resource service administration, they find a program. The acronym is LEND, L-E-N-D and it stands for Leadership Education in Neurodevelopmental and Related Disabilities. They’re training OTs, PTs, speech language pathologists, pediatricians, nurses, psychologists, special educators, it’s multi-disciplinary. And it’s a year long program where they’re learning how to be leaders and providing services to children and youth on the autism spectrum or with other developmental disabilities. So it’s been going on for a long time, and I think it’s a really creative program that we should see more of in training professionals.

Andy Imparato:

And then just quickly on Mark’s point, I should have mentioned, one of the things we need to see more of is more people with lived experience as clinicians. We talked about the diversity in the healthcare sector. We talk about disparities in the healthcare sector, but oftentimes when we talk about diversity of clinicians, we don’t always talk about disability as one aspect of diversity that can make a clinician better at practice of whatever their clinical discipline is. So just trying to get more of a conversation about discipline as part of diversity within the healthcare profession, I think would help also.

Kristen Sloan:

Great, thank you. We have a very interesting audience question for all four of you. Do you have examples of how simulations have worked to help clinicians understand the lived patient experience? Training is great, but can only go so far. Wondering if you could share more innovative ways to get to buy-in and awareness with clinicians. Let me throw that out to whoever would like to start

Mark H.:

I’m going to start. And one program that we’ve run for six years now is called the Interprofessional Student Hotspotting Learning Collaborative, essentially what it is, it’s an introduction to complex care for students in health [inaudible 00:25:40] profession schools. They form interprofessional teams, and they follow or work with one or more patients in their local system who have complex needs and are often in frequent contact with the health care system over the course of a semester or a year. And they really get to know that person, get to know their story and help to access resources. They also get to know their colleagues from different professions, so they can better understand what it means to be a professional team.

Mark H.:

Starting to experiment in that program with regulation. We’ve always had it as real patients and real stories and encounters, but we are learning that through simulation and other methods, there can be a lot of really, it’s the art of this practice of really getting to know and understand speaking respectfully, asking questions, sitting back and listening to people and not just coming in and dominating you have, I think three lawyers on this panel, we were all taught the power of our expertise.

Mark H.:

I know doctors are often taught and spend a lot of time learning about their level of expertise and it takes a certain humility to really go in and be patient-centered to know that you have that expertise, but to be curious and listen, and to understand what it is that your patient wants to hear. And I think that’s something that needs to be taught to our younger trainees as they’re going through the process. And so I think there are lots of ways to do that.

Kristen Sloan:

And can this kind of program that you’re talking about, can it be replicated?

Mark H.:

We’ve got four hubs across the country right now. So we’ve got four different universities that operate the program from California, Utah, Illinois, and Pennsylvania, and then other universities can join the program and have teams in their universities. So we’ve been in, I don’t know, 70 universities around the country that have had teams and we’d love to see much more of this going on. I think that sort of real life experiential exposure to people with complex needs and really understanding, getting to know a single person or a couple of people and understanding their desires, their life trajectory, their goals for themselves at a time when you’re just learning your art and your science can be transformational in how you approach the work.

Kristen Sloan:

Thank you. Do any of the other panelists want to jump in on that one?

Andy Imparato:

This is Andy, I’ll just say in the LEND program that I was mentioning earlier, there’s 53 sites around [inaudible 00:28:47] program, but many of them assign each of their trainees to a family that has a child on the autism spectrum or related disability. And the kinds of things that they do with that family are not clinical. They’ll go with the family to an IEP meeting, they’ll go, or an individualized education plan meeting in the context of special education. They’ll go with the family to the grocery store and see how the public reacts to the behaviors of the child in the grocery store. They’ll go with the family to a hearing if they’re citing for a Medicaid service for their child. And I think by spending quality time with the family and seeing the way that the broader society interacts with the family, added stresses that puts on the parents and the family is an important part of their clinical education.

Kristen Sloan:

Thank you, Andy. So Andy, you touched on this slightly, but this question is really for each one of you, all of us as patients have faced what I would call one of the isms, age-ism, sexism, some kind of prejudice. And I would like your input on how you see helping practitioners see the patient as an equal partner in their care. Karen, can I start with you?

Karen Marshall:

Yes. Sorry about that. Had a little trouble unmuting first.

Kristen Sloan:

No worries.

Karen Marshall:

So I’ve definitely experienced isms firsthand as you can probably imagine. But the ones that are most poignant for me right now are those that are experienced by my parents in particular, my father, who was well into his 70s before he actually had experienced chronic health condition, required him to receive complex care. He was 75 years old, very strong man who went out into the woods for a living and chop down trees. And my parents gave me a lot of grief for not getting into the family business, but he was a very strong man and he never had a medication that he had to take for an extended period of time. Never had any serious health concerns until he got into his 70s and his aorta tore.

Karen Marshall:

And then suddenly this man who had never had a serious health condition was on a very complex medication. He was a widower at the time and he was living by himself and he was struggling to wrap his mind around the loss of his health, as well as now complex healthcare needs. And we found that despite his limited, and he had a limited family history, and every time he went to the doctor they kind of questioned whether or not that was actually the case. He got checkups and that type of thing. He was just always healthy. And his word really wasn’t taken about his lived experience, wasn’t taken as something that was accurate or dependable. And I actually ended up having to accompany him to most of his appointments and validate the fact that yes, what he’s saying is true.

Karen Marshall:

He’s never had high blood pressure or anything like that in life. And I think I watched my father become very disempowered in his healthcare visits. The doctors would talk to me, well meaning, they would talk to me because I was seen as the more, I could speak their language a little bit better. I had obviously gone to college and gotten a professional degree and was kind of more on their level than my father, and educationally speaking. And I always felt kind of sad. I felt that I had to step up and be an advocate for him, but it also felt sad to watch him sort of shrink and not have much input in his visits or if he did to kind of have it glossed over. And the impact of that was when we left the doctor’s office, he didn’t necessarily trust whatever it was that the doctors had recommended for him.

Karen Marshall:

And it also had impacts on me as far as my responsibilities as caregiving. And I would say that it’s very important regardless of race, gender, age, that everyone be treated with respect in terms of their lived experience. And if it’s not something that you can’t personally identify with at time needs to be taken. And I know that we’re all pressed for time, but if we’re going to deliver quality care, that time has to be taken to at least try to get some understanding of the perspective. And if there is a caregiver or someone who can be a conduit to understanding it, not to forget that the patient does deserve a snack and the patient cannot be left out of the experience, they must remain engaged.

Kristen Sloan:

Thank you, Karen, Andy, Mark Alayna? Anything to add?

Alayna Tillman:

I think that it goes back again, to what I was saying about educating the clinicians. Several years ago I was part of a group with the American Diabetes Association and they had a pastoral care program that they reached out to in this case, was the black churches. And then they had another committee for the Latino churches. Well, they realized that the church was very important part in those cultures. And so they started engaging pastors and priests to be part of the ADA, to be part of the programs and to expose the community to things that were out there that took into consideration the culture and the beliefs of the patients. They right now haven’t been doing it as much. But I really saw that. I think that it helped because then pastors who may not have been part of it were engaging with other pastors.

Alayna Tillman:

And after a while, you can see that they were kind of taking it into heart, that maybe we need to listen more to what these people are from, the perspective they’re coming from, and not necessarily that medical side, to not say to an African-American family, “Sorry, you can’t have macaroni and cheese,” when that was set on every plate or every meal. And so they started reaching out, finding ways. How do we help within the constraints of what they believe to show them what they need to do for their health. And it’s really, I think made a difference.

Kristen Sloan:

[inaudible 00:35:31] on something really important, do clinicians need a different kind of training than they’re getting right now to deal with patients? And what kind of training do we need to give to patients and who should do that patient, sorry, who should do that training to empower them?

Alayna Tillman:

I think for the clinicians, it has to be just their willingness to go out, to reach out to, if they have a minority, most of their patients are minority, to find the church or some group in that community that can help them to understand. And like I said, it’s that willingness that’s going to make a difference. In terms of the patients, it’s going to be groups like Karen’s, it’s going to be like the Los Angeles Caregivers Center and other programs that are there. There are so many out there now, [inaudible 00:36:26] I didn’t even realize doing things. How many are out there now that the patients are going to have to start looking for the resources and the organizations getting out there and getting into the community and asking, “Do you have neighbors or friends who are caregivers?” And reaching out to them to say, “Come, join our group.”

Alayna Tillman:

It doesn’t cost you anything. But maybe a few minutes, once a month or whatever, and to take these classes and support groups and things that are offered so that we, as the family caregivers and family members can go in, like I said, go in empowered.

Kristen Sloan:

So you’re thinking both as a systematic approach, but also a local kind of a voluntary community approach as well?

Alayna Tillman:

Yes, very much so.

Kristen Sloan:

Andy, thoughts?

Andy Imparato:

Yeah. Going back to your question about the isms, I wanted to give an example that happened in California during the pandemic. In my experience, ageism and socialism or discrimination on the basis of disabilities are often intertwined, and an example of how that played out in California during the pandemic is the California Department of Public Health came out with some draft standards that they call crisis standards of care. And these were standards that were supposed to be used in a surge where we had limited access to ventilators or other scarce medical equipment, how would we make decisions about who was going to get that access and the original standards that they came out with, which were developed primarily by clinicians, without any input from the disability community or people with lived experience, were just enablers. They basically were enabling discrimination on the basis of disability status and age, when you’re trying to decide who gets a ventilator.

Andy Imparato:

So instead of just saying, is it going to save their life? They were asking the question, is this a life that’s worth saving? And the ways that they determined that had built in some options based on their quality of life or the value of a life of somebody with a disability, chronic healthcare condition or somebody after a certain age. And we pointed out that it was discriminatory. We threatened to take them to court over it, or file a complaint with the Office of Civil Rights or the Department of Health and Human Services and to their credit, they sat down with us and worked out standards that we felt were dramatically improved. But I just pointed that out as an example, you need people with lived experience at the table when you’re trying to make hard decisions about healthcare. And the fact that a state like California had to be told that, is a sign that we still have a lot of work to do.

Kristen Sloan:

And, you raised a number of really important points. One of which is reaching out to other organizations. How many of you and your organizations partner with physician groups and other patient advocates in putting together standards or principles around patient engagement?

Andy Imparato:

So just real quick to follow up on the example I just gave, we found a clinician at Stanford who agreed with us that the draft standards from the department of public health were not helpful. And we ended up finding a bunch of clinicians who agreed with us, and that’s how we were able to change the minds of the California Department of Public Health. It was helpful for us to have clinicians that agreed with us from a science standpoint, there was a better way to make these determinations. And the ones that have been drafted were not science-based and were not justifiable. So that’s an example of where we created a partnership on the fly, but obviously it’s good to have those as long-term partnerships,

Kristen Sloan:

Mark, how often do you all work with others?

Mark H.:

Yeah, so, I mean, just to build on what Andy said, I mean, I think it’s got to become the norm that you have patients or people with lived experience on these sort of system level bodies make part of the conversation. So it shouldn’t be a decision is made and then objected to by disability rights group, but that there’s actually representatives of the disability rights group in the room, making the decision in the first place, part of that conversation. And so whether that is in Medicaid advisory committees or advisory governors committees or health system board of directors or quality committees, there needs to be more spaces for people with lived experience at those tables, making those decisions. We’ve been doing that at the Camden Coalition on our board of directors, we have multiple people who are former clients or members of the community with lived experience. On our national advisory committee we have multiple people who have lived experience.

Mark H.:

And we’ve learned sort of from trial and error, ways to make that more successful. So often you need to make sure that you are supporting those folks. They don’t always know all the lingo that people in healthcare speak. And so it forces you to be more intentional about the language that you use. You need to think about their time and can they make the meetings at the times we hold them. Do they need transportation? Compensation for participating in bodies like that? I think there’s a host of ways to make it easy for people with lived experience to participate in those sorts of bodies, which is essential.

Mark H.:

Not only do they bring perspectives and ideas that the rest of us might not have, but being part of the conversation, they hold us accountable to our ultimate ends, which is improving their lives. And so the conversations we have with patients in the room can actually be different than if they’re excluded, and I think in meaningful and valuable ways.

Kristen Sloan:

Thank you, Mark. I want to switch gears just slightly. We’re entering our ninth month of this pandemic and we are all learning what is good about the healthcare system and where the gaps are. We’re seeing innovations crop up in the healthcare system, and we’re seeing some serious gaps in coverage and access, particularly in communities where there are health equity problem. So let me pose this question to you, how would you from a patient advocate active perspective, engage consumers who currently live in underserved community more actively in their care?

Mark H.:

I’ll talk about one of the things that we have built at the Camden Coalition, which is our community advisory council. And so I just mentioned our board of directors has a couple of people with lived experience. They’re actually members of this community advisory council and are selected by those members to represent them on the board. So what you have is an all consumer community body that really supports one another, they come together monthly, they learn together, they share together, they consult and provide input into the work of the organization. And they are part of the journey. This is part of their journey too. They’re getting something out of it. They’re learning, they’re contributing and creating those sorts of spaces that are social, that are peer support. And where all people can find information and give back.

Mark H.:

Those are all elements that really resonate with our patients and things that they want to get from life when they’re in a position to be able to give. They want those opportunities. So having those bodies can be really essential to represent a much broader set of perspectives of people with lived experience. Like we said earlier, there’s not just one sort of persona of a person with lived experience. Each person has been a patient, comes with all their other elements of who they are as a person. And so we don’t want to make the mistake of just assuming, oh, this one person represents all people who are our patients of this company.

Kristen Sloan:

So we have an audience question that’s related to this, which is aren’t you all really talking about building power among patients? How do you define how and where this power is developed and channeled for maximum impact on the healthcare system and for the patient?

Karen Marshall:

Actually, would you mind repeating the question? I know that our [inaudible 00:45:33].

Kristen Sloan:

Sure. So the audience question is aren’t we talking about building power among patients? How do we define what that power is and how to develop it and channel it for the maximum impact?

Andy Imparato:

Well, I’m happy to go first. I love the question. I would argue that it’s hard to build power around the word patient. The word patient is not a power word. So I think part of it is being clear. We’re trying to build power in the community to hold the healthcare system accountable. And that starts by helping the community understand that they can build power and have an impact on the system. They can get engaged in the policy making process with their elected officials and change the laws that affect how healthcare is delivered in their communities. They can serve on boards and advisory committees as a way of pulling power. And they can find the clinicians that have natural connections to the community and want to be strong advocates for those community voices. So what I love about the question is I do think building power ultimately, is the answer to most of the problems that we face as people with disabilities or people with chronic health conditions.

Andy Imparato:

We have to take kind of an organizer, a community organizer approach. And it starts with listening to people who are the closest to the problem and listening to what they care about the most. And trying to address that. And then trying to get decision makers in the healthcare system to pay it to those voices. The question was asked earlier, what can we do during the pandemic to build stronger partnerships in the community? And I think one of the most important things we can do is listen to the people that are experiencing the most pain and understand what are their pain points. Many of them will not be clinical, and then trying to figure out holistic solutions to their pain points so that they can experience less pain. And so that the whole system can be more accountable and function better as we get through this crisis.

Karen Marshall:

If I could jump in. I agree with so much of what, actually all of what Andy just said. And what I would add to that is that when we’re thinking about power, obviously we can circle back to that topic of equity and you can think of equity in terms of specific populations and specific communities. And you can also think about equity as terms of the patient and the family’s position with respect to the healthcare system. And it’s really not one of power. As I was saying earlier, people don’t necessarily understand the possibility of healthcare as a participatory experience. And so I think that one way to facilitate power or to transfer, or to provide more opportunities to start power, but before the systems and the institutions that traditionally, whether intentionally or not, haven’t incorporated patient and family voices, to acknowledge that inequity, to acknowledge that there is lack of trust.

Karen Marshall:

And change doesn’t happen by identifying an issue and just staying there. And I know that could be a difficult place to stay, when you’re thinking about potentially contributing to the, at least not helping to move past dispowerment of a particular group, but once that inequity, and once that lack of power is acknowledged, then we can begin to move forward and build a type of trust where patients and caregivers see that they have a space in this system and they can carve out a bigger space for themselves. And so this can happen with very simple things like taking services and supports to meet patients and their families where they are. To engage with them in their spaces so that you can cultivate this sense of belonging and participation.

Kristen Sloan:

Thank you, Karen. I have heard through your comments, some consensus around a few issues here. One is making sure that patients are actually part of the design process for any new program or system. The second is more systemic training of practitioners, doctors, nurses, social workers, and the third is actual training for patients. Let me ask you, are there other policies and programs that you’ve identified that could move us closer towards more activist patients?

Alayna Tillman:

Well, for me, I guess looking at the, like I said the African-American community, maybe more engagement with the churches, the Latino community, again, the same thing. The church is very important there. More reaching out to those. Reaching out to maybe social organizations that are in those communities that are doing service projects. I’m part of an organization business and professional [inaudible 00:50:56]. And one of our goals or set part of goals is looking at family and social justice.

Alayna Tillman:

So when we do projects, our organization is looking for groups to partner with because I’m part of Camden and the other CRs, they look to me to say, can we find a project within those communities that we can do this year. Small organization, we have 10 members, active members but we try each month or every couple of months to find something out of there and to bring it to the community, to have I guess you call it, not a town hall meeting because we’re so small, but to ask the community to come out and to bring a speaker. Karen Marshall would be great to come to a community event to know of her organization more.

Alayna Tillman:

Andy, I mean, and he’s here, I’m in California also. And so I’ve been looking forward to, when this is over to talk to Andy to see maybe there’s something, especially since now it’s remote, maybe something that he could do to talk about the disabilities and what their rights are. And so things like that on the small level front. And then you’ve got the Camden on the other end. So they’re working from one end and we’re working from the other. And at some point I think we’ll meet in the middle.

Kristen Sloan:

That’s terrific. Thank you, Andy. Quick thoughts?

Andy Imparato:

We just passed a bill in California that was signed by the governor that starts a process to create an opportunity to reimburse peers in the mental health system for providing care and support for patients in the mental health system. And I feel like there’s a much broader opportunity for the healthcare profession to recognize the role of people with lived experience, [inaudible 00:52:42] as guides, as peer support for people that are dealing with a diagnosis and trying to recover from a diagnosis and recover from symptoms. So I think it’s worthy to think about what have we learned from alcoholics anonymous from a variety of peer models in a variety of contexts. And is there a way to create an evidence-based system where peers with all types of lived experience are recognized for the valuable role they can play in healing and recognizing that part of the purpose of healthcare, not just diagnosis and treatment narrow sense, but it’s about healing. It’s about helping people rebuild their lives. There are other ways that we can tap into people with lived experience in a good way to help them provide that kind of healing and support.

Kristen Sloan:

Thank you. Well, I think you will agree with me that this hour has really flown by and I want to thank this extraordinary panel and also audience, but before we go, we part, we’re going to do a quick lightning round. Everybody gets one minute to make a final statement, to make the point that you’ve been burning to talk about. Karen, I’m going to start with you.

Karen Marshall:

Thank you. So I would just like to fit, all of the resources and all the opportunities for dialogue and providing [inaudible 00:54:22] services that have been offered by other panelists are great examples of where to meet patients and families where they there, whether it be faith-based communities, community groups, support groups that they’re held with that aren’t necessarily healthcare related, local recreation centers and libraries. These are places where outreach can make a big difference and can really begin to engage patients and their caregivers. And I would also add that we and the Veterans Administration for instance, have produced patient and caregiver journey maps that can help understand key activation points and lived experience, critical points where education resources and engagement are vital like diagnosis, admission, and discharge. I would advise people and suggest to people that they take a look at those caregiver journey maps and look for opportunities to be able to engage and understand the lived experience.

Kristen Sloan:

Thank you, Karen Mark.

Mark H.:

Yeah. Thank you, Kristen. This has been a great conversation. I think back to your opening question about redesigning the healthcare system. And we’ve talked a lot today about how to do that, and really it does require change in all of us. And one of the things that I think we need to see is people with lived experience, talking in environments like this one and in other sort of places of power. And so one of the things that we recently did just this week was to launch a new speakers bureau for our Camden scholars and other people with lived experience to be available, to go and speak at conferences, speak at grand rounds, be part of advisory committees, share their lived experience, share their knowledge with others in hopes of inspiring them to take on similar types of principles and goals of building that voice of lived experience in their own local community.

Mark H.:

So we’re calling it Amplify, because it’s amplifying the voices of people with lived experience, and it’s available to folks who want to bring in trained experts, speakers with lived experience to talk about their lives and it’s on our website, complex [inaudible 00:56:37] and would love for people to take advantage of that opportunity.

Alayna Tillman:

Yes. And I want to thank Mark for bringing that up, as I am actually one of the members of that speaker’s bureau. And I think Camden for giving me that opportunity to be able to be part of events such as this and others, that they definitely go to that. And people in the audience, if you have lived experience maybe you need to start talking to your community, not so much as the clinician, but as that person with the lived experience and reach out to organizations like Camden and Caregiver Resource Center here in California, and Karen’s organization, and offering your expertise, and you’d have expertise then to even offer.

Kristen Sloan:

Thank you, Alayna. Andy, you get the last word.

Andy Imparato:

Well, thank you. I appreciate the opportunity to be here today. I’m grateful to Sarah Dash for thinking that I had something to say. She and I are former Hill staffers together. So long-term relationship. I’ll close by saying that I think the training clinicians often has built in ableism. And one of the things that clinicians need to learn to do is unlearn [inaudible 00:58:01]. And the best way to do that is to talk to people with disabilities who are part of the Disability Rights Movement. I guess the goal for clinicians who are working with people with complex healthcare needs, all of whom are protected by the Americas [inaudible 00:58:16]. Clinicians themselves start to see themselves as part of a disability rights movement and recognize that by supporting disability rights, they’re helping to empower the folks that they’re serving clinical setting.

Kristen Sloan:

Alayna, Andy, Mark, and Kristen, thank you for being such a terrific panel. Kathryn, we’re turning it back to you.

Kathryn M.:

Thank you, and echoing Kristen, thanks for having you all join us. It was a great way to kick our summit. [inaudible 00:58:52] I thought I was unmuted. [inaudible 00:58:59] better now. Okay, perfect. Just want to say, thanks everyone. Want to make sure that you all fill out the brief evaluation survey that you’ll receive immediately after the broadcast ends [inaudible 00:59:17] via email later today, we truly value your feedback. And we hope that you join us again tomorrow and Thursday. [inaudible 00:59:25] a panel of events for the rest of the week. And if you’re looking for [inaudible 00:59:32] to this webinar, it should be available on our website soon. So thank you, and have a good rest of your day.