Empowering Patients to Navigate and Negotiate Health Care

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

Tanisha Carino:

Hi, I’m Tanisha Carino. Thank you for being part of the Voice of the Patient Summit. And as an Alliance board member, thank you for your continued support and partnership. At Alexion, we’re on a mission to transform the lives of people affected by rare diseases and devastating conditions. To achieve our mission, we recognize that every patient’s journey is unique. So that means that we have to listen differently. Listen with humility to their stories for how our medicines can change their lives. For people living with one of 7,000 rare diseases, this is especially critical. Particularly when you consider that only 5% of rare diseases has an approved treatment. So let’s close this gap. Patient engagement remains one of our most powerful tools to do this. And at Alexion, it means working with patient communities early in the design of our clinical trials and even bringing our research into their homes. So as leaders, it’s up to us to help patients get the care they need. And it’s up to us to start by doing this by listening. Thank you. Hi, I’m-

Kathryn Martucci:

Hello. Hello. And thank you for joining the fourth session in the Alliances 2020 Signatures Series Summit on 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. And throughout this three day event, we aim to study how the patient voice is collected, how it supports shared decision-making, how does leverage and policy translating efforts. All to make sure that the patient experience is improved and that we are building healthier futures.

Kathryn Martucci:

I want to take a moment to thank our 2020 signature series sponsors. We appreciate their support in making this summit happen. You can also join today’s conversation on Twitter using the hashtag AAHPsummit20 and follow us at AllHealthPolicy. We want you to be active participants in this conversation. So please have your questions ready. You should see a dashboard at the bottom of your screen with some icons. Use the two speech bubble icon labeled Q&A to submit your questions for the panelists at any time. We will be collecting these and addressing them throughout the broadcast. You can also use the Q&A icon to submit any technical issues that you may be experiencing.

Kathryn Martucci:

And finally, I urge you to check out our website, allhealthpolicy.org. We have summit background materials, including the speaker bios, resources lists and experts lists. And recordings of completed sessions will be made available there soon. And now, I am so pleased to introduce Dr. Eleanor Perfetto to moderate today’s discussion. Dr. Perfetto is interim chief executive officer at the National Health Council, where she has also served as the executive vice president of strategic initiatives. She also holds a part-time faculty appointment at the University of Maryland, Baltimore, school of pharmacy, where she is a professor of pharmaceutical health services research. And her work primarily focuses on patient engagement in healthcare, including comparative effectiveness and patient centered-outcomes research, medical product development, patient-reported outcome selection and development, value assessment and healthcare quality.

Kathryn Martucci:

And with all of those expertise, we are so pleased to have her moderate this discussion on Empowering Patients to Navigate and Negotiate Healthcare. So Dr. Perfetto, I will turn it over to you.

Eleanor Perfetto:

Thank you very much, Kathryn. I really appreciate being invited here today. I want to welcome everyone to this session. We’re going to be exploring successful mechanisms to support patients in navigating the current highly complex healthcare system and fostering independence in decision-making. We’re going to look at care navigation, digital tools for patients, shared decision-making between patients and their providers to help them personalize their care. And how the patient’s voice should be and can be leveraged in developing these approaches. So it’s my pleasure to welcome an esteem group of experts who’s going to be speaking. And first I want to begin with Dr. Stephanie Anderson. Dr. Anderson is the executive director of Respecting Choices. And in her role as CEO, she provides leadership for the delivery of Respecting Choices programs, bringing over 25 years experience in palliative care and hospice, home care, case management and emergency medicine.

Eleanor Perfetto:

She’s the vice president of the board for Advance Care Planning International and co-chairs the National POLST, P-O-L-S-T, POLST program assistance committee. Dr. Anderson, [inaudible 00:05:18] doctorate from nursing practice degree from the University of Iowa. And she’s actually joining us from Iowa today, where they actually have four inches of snow on the ground. I’m pleased to introduce Ms. Maria Lemus, the executive director of Visión y Compromiso. And she’s served on numerous public health advisory committees, including the Health and Human Services Promotores Advisory Committee, the California Latino Mental Health Concilio for the Reducing Health Disparity project and the California Hispanic American Cancer Society Hispanic Advisory Committee, among many others.

Eleanor Perfetto:

She has 21 years of management experience at the California Department of Health Services, the City and County of San Francisco and the California Department of Corrections. She holds a bachelor’s degree from the University of California, Riverside and is an alumni of the National Hispana Leadership Institute and of the California Women’s Policy Institute. We welcome Maria. And finally, I’m pleased to introduce Jen Horonjeff, patient advocate and founder and CEO of Savvy Cooperative. In 2018, she was named one of the entrepreneur Magazine’s 50 Most Daring Entrepreneurs. She grew up with juvenile idiopathic arthritis and is a brain tumor survivor. So Dr. Horonjeff is a patient-centric outcomes researcher, human factors engineer and an FDA consumer representative. She [inaudible 00:06:49] a master’s in Ergonomics and Biomechanics and a PhD in environmental medicine from New York University.

Eleanor Perfetto:

So I want to begin by thanking all three of you for joining us here today. As I mentioned, we have Iowa, San Francisco and New York city. So I think this is probably the most geographically widespread panel of the meeting. So we’re going to begin by having each of you respond to a question. I’m going to give you three to five minutes from your own perspective to talk about and for you to share a brief example of a lesson or an experience you think best summarizes, why the patient voice is so important in the sector that you work in. So we’re going to begin with you, Stephanie. I’m going to turn it over to you.

Stephanie Anderson:

Great. Thank you so much, Eleanor. And thanks to the Alliance for the invitation to speak today. I’m honored to talk about this very important topic. I’m going to share an experience that speaks to aligning care with what matters most to individuals. A deep divide exists in the American healthcare system between patients’ values and preferences for care and the care that they receive. We know that today many patients get care that conflicts with their personal values. It’s a story that plays out all too commonly in many settings across the country. Evidence shows us that 70% of older Americans say they would want to die at home, surrounded by loved ones but in reality, 70% die in a medical setting. Think about that, how does this happen?

Stephanie Anderson:

As a society, we imagine that we will be relatively healthy until suddenly we die. The fact is that the vast majority of us will experience a slower decline due to chronic illness marked by episodes of sudden worsening where decisions will need to be made for us. In fact, almost 70% of us will become unable to make our own decisions at some point. Most people also worry about burdening their family, making tough decisions for them. And yet the majority of us have not done the bare minimum to avoid that situation from happening. This means families are left uncertain on how to advocate for what care of their loved ones would or would not have wanted.

Stephanie Anderson:

And many health care teams are left uncertain how to navigate the difference between all of what can be done in modern medicine to what should be done based on what matters most to this person. So how can we ensure that all of us but especially those who are the sickest and most vulnerable have high quality of life and equity and care even during serious illness? The experience I’m going to share with you is the results from a research study led by [Dr. Maureen lion 00:09:35]. The clinical study took place across five HIV clinics in a large urban area. The researchers recruited nearly 450 people all with HIV between the ages of 22 and 77. 86% were African-American, 40% were below the poverty line and almost half had a high school education or less.

Stephanie Anderson:

There was also a diversity of sexual orientation. These researchers wanted to know if by having advanced care planning conversations, there would be better understanding of individuals preferences for care between the individual and their surrogate decision maker, even if that individual’s preference has changed over time. These individuals were helped to identify a surrogate decision maker first and then each pair participated together in two facilitated advanced care planning conversations using the Respecting Choices program known as Next Steps. Researchers then separately interviewed the patient and surrogate to see if they each had this same understanding of the patient’s treatment preferences.

Stephanie Anderson:

Now for the impressive findings. First, in this vulnerable population, fear of engaging in advanced care planning conversations was not a barrier. Almost 100% came back for the second conversation and remained engaged throughout the study. So why weren’t they afraid and why did they stay involved? Well, when the foundation of a conversation is to first, just turn what matters most to a person to learn who and what is important to them, their goals, their values, their beliefs before ever discussing preferences, people feel respected. They feel listened to as a person and not merely thought of as a diagnosis. So in the words of study participants are better said for this, the Voice of the Patient, I quote, “Everything has been moving toward a positive direction after starting this study in terms of not stressing so much and thus, my health improving in terms of weight gain after losing 30 pounds from stress. And from another voice, “It’s a little bit like therapy because I’m talking and it’s like, I’m not getting judged.”

Stephanie Anderson:

This study found that early advanced care planning was not feared. As I said, it was welcomed. There was decreased anxiety for patients, their surrogates, their family and other loved ones. The conversations provided… And I quote from many voices in this study now, the conversations provided peace of mind. Secondly, there was increased congruence between the patients and their surrogates. The surrogate knew and reported the patient’s preference accurately, even as those preferences changed over time, demonstrating the enduring power of the conversation. So what’s behind that? Again, let’s go to the voice of the patient. I quote, “Up until now, I never put much thought into everything. It has also made me realize how much I was asking of my surrogate to do on her own prior to this study without my input. Now I know she’s better prepared. I know someone is going to stand by me, making a commitment to honor my treatment preferences.” Conversations matter.

Stephanie Anderson:

Early advanced care planning before end of life that includes a surrogate decision maker can be an effective mechanism to bring peace of mind and navigating the healthcare system through opening lines of communication and building a trusting foundation, conversations continue even outside of a formal advanced care planning conversation, leaving a well-prepared surrogate to advocate for individuals who don’t currently feel empowered or represented in our care system. So it’s been my pleasure to have the opportunity to present this important experience, elevating these critical considerations as we work together to hear the voice of the patient in healthcare. Thank you. And I look forward to your questions after my colleagues [inaudible 00:13:35] finished their presentations.

Eleanor Perfetto:

Thank you, Stephanie. That was a great case example. Maria, I’m going to go to you next.

Maria Lemus:

Well, Stephanie, I really appreciate what you just said. I think that it’s relevant to what I’m going to be saying in a few minutes. I am Maria Lemus, founding executive director of Visión y Compromiso and I’m really pleased that we are celebrating our 20th year this year. We started as a grassroots organization with a few of us who grew into a few more. And before you knew it, we’re really a national organization supporting [foreign language 00:14:08] who are community leaders. We’re primarily a Spanish speaking organization and we’re founded on the belief that we have community experts that we call promotores. They could be your mother, they could be your grandmother, your uncle, your aunt. It’s a historical reality that we’ve had these wonderful men and women since Eve was a grandmother.

Maria Lemus:

They’re unrecognized but they’re essential to our communities, whatever community that you live in, they’re just called a different term. We happen to call them promotores. What is I think profound about the movement since we’ve been organizing and bringing wonderful leaders together, they first wanted to know a little of a lot of information, because they were always bringing information to the community. They were those bridge builders. I think if you look at a literature review, you’ll find that in particular, in chronic disease and with research studies were really effective for education and outreach. And I think that’s been our mainstay. But I do want to say that what we say is [inaudible 00:15:20] is really have a role from preconception to death.

Maria Lemus:

There is a role for us in anything. And I appreciate what you said, Stephanie, because I really truly believe that from getting… As a young person, ready to enter into parenthood or from birth from zero to five in early childhood or as you’re in hospice or palliative care or you’re ill. There is a role for Promotores in that education and information but now through navigation of services. In terms of the patient, what we find that the Promotores have always done is they’ve always been that conduit of information, kind of the interpretation of the information. For instance, let’s look at senior services and the system that exists in the United States. How is it that a senior can really find relevant service in their senior service when they don’t like the food, it’s too far, they don’t have a car, they can’t get there.

Maria Lemus:

And they just don’t understand the system. So what we’ve done… What the community does is that the community then builds alternative systems. And the Promotores is that bridge to those alternative systems. So the example I’m going to use is we have a core curriculum called transforming communities where we really support the leader, provide a lot of leadership and training. And our first cohort was at El Clinica OLE, which is a farm worker clinic in Napa. And it was with the clinic, asked us to come in and give this training to 20 patients that were diabetic. They were all farm workers. And in the evenings from six to nine after they came off the fields, we started this training. They asked us… So the nurses brought in some things for them to munch on, broccoli, carrots, [inaudible 00:17:22].

Maria Lemus:

And then they noticed the next day that they didn’t eat it. And they asked me, “Why?” I said, “Well, I don’t know why.” So I asked them and they said, well, they don’t eat broccoli. It’s not common. They don’t eat cauliflower and they don’t eat those things. So I said, “Well, what would you like?” So they said, “Why don’t we bring what we think is what we eat.” So the next, they took turns. The next time they brought a nopal salad, which is an amazing healthy food. They brought chayote. They brought all these foods that were really relevant to them to share healthy foods that they knew. Well, that’s an extraordinary event for me and for the nurses, because they never thought, “Well, why not ask them what is it that they will eat?” They just gave them what was the quote, the American version of healthy food.

Maria Lemus:

But the takeaway from here is that in each culture, we have our own healthy indigenous historical foods. How do you honor that in a system that doesn’t understand it? The nurses didn’t know what chayote and nopal were. And so, they couldn’t integrate into their recommendations. From that class, we have a [foreign language 00:18:29] who we call Don Jesus. Don Jesus, continued with the adventure. He’s part of our network. And he developed… He started informally cooking Mexican food in a healthy nutritious way. He was so taken by this diabetes class and our training. So he developed something called [foreign language 00:18:46], which is good I feel good. But it’s more than that. His philosophy was, if I get up in the morning, I dress up, I go somewhere… I mean, I put on nice… I wash my hair, I brush my teeth and I go somewhere and I’m eating healthy, then my emotional, as well as my physical health will improve.

Maria Lemus:

And so this male [foreign language 00:19:10] is one of our core classes, as we look at chronic disease and behavioral change. He started to teach classes. We have it all over the state. Now it’s part of our curriculum. And this is an example how community understands. It’s able to interpret some of the things that they’re told. Now in the clinic, they said, eat better, eat this, exercise, [inaudible 00:19:33]. Many things that he couldn’t do and they couldn’t do because it wasn’t relevant to them. They didn’t understand it. The other piece to it is what we call [foreign language 00:19:42]. And so, in addition to that, we developed an exercise program that Promotores developed based on how they… It’s a wellness exercise, so they come, they talk about nutrition, they do our version of wellness exercise and then they hang around afterwards, they stay afterwards and they talk.

Maria Lemus:

And so you have a little support system. And we now certified promotores to do this. They do it in the community. We cover their insurance. They do it in rec centers and parks in the summer, people walk to it. They don’t have to pay a fee and they hang out with their friends. So those two are examples of how community has been able to develop systems to support their health and wellbeing. They’re not on track, they’re not validated or even recognized with the institutions but when they don’t have access to services, when they don’t understand what they’re being told in the quote, the typical mainstream way, communities are able to develop these kinds of systems. And the end, what we say is that we really agencies and the public health system to look at partnering with community, that going to scale is partnering with community. There are so many Latinos, I’m a Latina. My parents are from Mexico.

Maria Lemus:

When I was a child, we had a lot of Latinos but now, exponentially, I’m overwhelmed by the number of us that there are in the United States. And how are we going to provide good service to us with a few community health worker positions that we can support financially in a system? You have to partner with community. And that’s where we think that that dotted line, that bridge to community supporting these community programs, honoring the community programs and the expertise that exists is the way we’re going to be able to mitigate and also to support better health in our communities.

Eleanor Perfetto:

Maria, thank you so much. Great examples that you provided. Jen, we’re going to turn to you.

Jen Horonjeff:

There we go. Because I follow directions, I muted myself. All right. [inaudible 00:21:55]. Can you hear me? All right. Well, thanks so much again for having me and to my other co-panelists thank you for sharing your stories. It absolutely all resonates with me. You can see behind me, my tagline that our organization Savvy Cooperative has, is ask patients because as you have both identified, we need to understand the priorities and the preferences of the people living with certain conditions or their caregivers and understanding that community approach as Maria I was just talking about. So my story and my background is I am somebody who considers themself a patient. I’ve grown up with several chronic illnesses. Most notably I was diagnosed with juvenile idiopathic arthritis when I was an infant, along with several other autoimmune conditions. I did have a brain tumor removed, I guess, seven and a half years ago.

Jen Horonjeff:

And so, I certainly have been influenced by my patient lens. Truthfully, I thought I was going to become a physician. As a sick kid, what’s what made me sick kids think, “Oh, I’ll go on to be a doctor.” But I was actually disenchanted by our healthcare system, seeing that my positions couldn’t even practice the medicine that they wanted to. So instead, I became a human factors engineer and human centered designer, trying to think about like, how can we design the world for people like me who have limited mobility or things of this nature, rather than just excluding people that don’t fit the mold of what these people sitting up in a room have designed for them. I then went into academia. I was studying patient centered outcomes, really in clinical trial outcome measure sets or treatment guidelines to try to make sure that we can understand what matters to those patients.

Jen Horonjeff:

Because so much of this happens if we take a clinical trial, for example, the drug developers and others that are involved in that research are just saying, “These are the measures we care about.” Then 15 years later, a drug comes to market and we talk about the almighty shared decision-making. But if we haven’t measured what matters to patients early on, then the patients don’t have the information that they need at the bedside or in the clinic to make those decisions with their clinician. If a patient like myself with auto-immune condition says, “Well, which one is going to make me less tired and fatigued?” And if we haven’t measured that, then how can they make a decision that works for them in their lives? And so, all these things were what I was seeing and because I’m very vocal about my patient experiences, what was then happening is that colleagues were turning to me and saying, “Hey, Jen, you’re a patient. We weigh in on this committee or that project.”

Jen Horonjeff:

And at first, sure. I was happy to. But then as they kept coming back to me, it really signaled an access and diversity problem. Because obviously, as somebody who’s white with a PhD and lives in New York City, you cannot possibly speak on behalf of 54 million Americans with arthritis. And I was uncomfortable being asked to do so. And that’s really where Savvy Cooperative, my organization was born out of. Was, how do we make it easy for these two sides to connect? Because otherwise, you’re just going to be talking to kind of… I consider myself a low-hanging fruit, if you will. I was easy to access because I already had a seat at the table. And if we only ask those individuals, then we’re only going to innovate for people like me who may have higher health literacy or different socioeconomic status or certainly bias towards certain races or ethnicities, genders.

Jen Horonjeff:

So we need to really be thinking about how do we actually do the work to reach those individuals? And so, Savvy Cooperative is actually the first and only patient owned co-op. So we’re member owned by patients and by individuals that allows those innovators to connect directly with diverse patients for caregivers. And like I say, our model is very different. We empower our members to then go into their communities in culturally sensitive ways to find people to participate in things like focus groups or interviews or surveys or things like this, so that we can capture those voices. So we’re not a typical advocacy organization. We don’t do programming or policy. All of that is amazing work. We look to partner with those types of organizations but we do the one thing of just trying to make sure that we’re not skipping over this stuff because it’s hard.

Jen Horonjeff:

We don’t know where to find patients, “Oh, that’s too hard or it takes too much time or effort.” And so, that’s really… So the problem we’re trying to solve for. When it comes to thinking about where are some real-world examples? I mean, I could go on forever. But I’ll give you one example, thinking about like a policy standpoint. I know we’re in the era of tele-health now. Many people were very surprised to learn that… During the pandemic, I had my very first telehealth appointment because I live and breathe health innovation and I’ve been a patient forever. And I had my very first remote rheumatology appointment and people were surprised by that. But so often I have so many specialists. They were not the first movers in the tele-health space.

Jen Horonjeff:

I live here in New York City. I’m from outside of Boston, originally. I have many of my positions I still see there but because of state lines, I wasn’t allowed to have telehealth appointments. I would have to pay $300 for a train ride out to Massachusetts for… I joke with my neurosurgeon appointment, love him but the appointment’s about like 120 seconds, because he just pulls up last year’s film and then this year’s film and says no tumor and then I leave. But it costs me that much money to go do that kind of appointment. And so, I think that trying to understand what those frictions that patients run up against rather than just guessing and then getting it wrong. And my least favorite term in healthcare is non-compliance because we label patients with being non-compliant but we actually haven’t done work in the beginning to understand what are their needs, what are their priorities?

Jen Horonjeff:

Does it fit seamlessly in their life? Or are we just coming up with new solutions and throwing it on them? That’s what I’m seeing a lot of in the pandemic is, “Oh, cool telehealth here. Now you’re going to use that app.” And none of it works together and we’re just making the patient have to figure it out and we haven’t done the work. So thank you for having us to have this important conversation. And I hope we can talk about more ways to ask patients so that we can make sure that these things are actually solving problems that patients have.

Eleanor Perfetto:

Thank you, Jen. I think all three of you touched upon some points that the National Health Council is very sensitive to and that we’ve been doing a lot of work on. So I think we can have a great conversation. I think I heard a theme going across all three of your presentations that had to do with engaging patients and co-creation. I mean, certainly those were the top things that I think came out of all three in terms of common threads. So I want to jump in and ask you a question, while we wait for some questions from the audience to come in.

Eleanor Perfetto:

So please, by all means everyone submit your questions. And I’ve got a few to kick things off. In terms of that idea of engaging patients and having them really be involved in co-creation, can you talk a little bit about… in terms of your creating models for doing this and how you’ve been doing it, what are those kinds of successes that you’ve experienced but what are some things that you’ve seen that could have been done a lot better? Because I think our audience can learn from good examples but they can also look to the examples that they should be avoiding also. So, is anyone want to… have something in mind that they want to jump in? I see Stephanie’s got a smile on her face. Maybe you can jump in Stephanie and share.

Stephanie Anderson:

Sure. I’m happy to share. One of the strategies we have used… There’s two actually that are probably the most successful engagement strategies. One is, if a trusted doctor tells the person that they’re caring for, that these conversations are a part of routine health care and really important and why? The rationale, why? And then listens to them about if they have any fears or worries or concerns about these conversations, that’s huge. That’s one of the most successful engagement strategies. The other and my favorite is the use of stories. So I will tell people that I bribed my two children when they were legal adults, young legal adults to have a 15 minute conversation with me. I couldn’t motivate them any other way. So my husband and I… They were 18 and 20. And my husband and I asked them for 15 minutes and it was a two and a half hour conversation.

Stephanie Anderson:

And it was one of the most powerful conversations our family has ever had. It opened up streams of communication about their preferences and their health. They could relate to if they were in a car accident and had a week where they were unable to make their decisions that mom and dad weren’t automatically their decision makers any longer. And thinking about that. So finding a story that’s relevant to the person you’re talking to and that they can relate to the situation. If I had started by saying, “Someday, if you have cancer, heart disease, what would you…” No. Uh-uh (negative). Let’s relate to who is in front of us and what’s important and relevant to them.

Eleanor Perfetto:

[inaudible 00:30:40].

Stephanie Anderson:

Oh, I paid for dinner and a movie for each of them to [inaudible 00:30:44].

Eleanor Perfetto:

Okay, very good, very good. [inaudible 00:30:44].

Stephanie Anderson:

[crosstalk 00:30:44] pre-COVID.

Eleanor Perfetto:

Maria, do you want to jump in here?

Maria Lemus:

What we do is we really look to the community. In our [foreign language 00:30:58] when they come together, our structure is that in each region, the leaders come together in communities and [foreign language 00:31:05]. And they define what their issues are under health, immigration and education. But we really look to them as experts. And so, we ask them, we’ll just ask them questions. What do you think is the issue? What do you think is the solution? How would you go about it? How can we help? And then we’ve formalized that into a curriculum or into workshops. Oftentimes, they participate. They’re the ones who are trainers. And so, we do a lot of training of them to be trainers. And lift up their expertise.

Maria Lemus:

That builds a lot of credibility in the community with us, with us as an organization but also credibility that the expertise is in the community. And I would say that what’s really important is to not just go in there and say to community members, this is what we think but rather let’s have a conversation. What do you think? Much, like Stephanie said, let’s just have a conversation, because there’s a lot of already professional intimidation that goes on when someone with some degrees comes in and starts to ask. And there’s a lot of wariness and wariness about people doing that in our community. And so, you have to establish that relationship first I think or work with agencies that already have that relationship to be the gatekeeper.

Maria Lemus:

But what we do and I think what has made us very successful and legitimate in the promotora community and trustworthy is that we don’t build things out of the sky. We start the conversations on what’s important. How can we help you? What resources do you need? How is it relevant to your community so that in the Bay area, it could be different than in Madera in the central Valley, which is where I am right now. So different from the Bay area. I cannot tell you. I mean, I’m driving through the fields of cotton and almond trees and there’s no relationship to being in Berkeley. So we have to keep it in perspective to that particular community.

Eleanor Perfetto:

Jen, I’m going to switch gears a little bit with you. You mentioned technology when you were giving your opening remarks. And so, I’m going to ask you to talk a little bit about your thoughts on how patients can be using technologies, digital technologies and other technologies or how can they leverage those to be navigating their own care? And I think you brought up… There’s so many things that have been developed and it’s one of my pet [inaudible 00:33:33], yeah, let’s throw technology at patients but not think about how they can best leverage that technology. So what are your thoughts on that?

Jen Horonjeff:

All right. Well, how much time do we have? I’ll try to condense it but I think you’ve already identified one of the issues that I’ve already mentioned. Right? We don’t know if that tech is helpful or not. I mean, we work with so many different types of companies and we work with a lot of like the big pharma companies and they come to us when we say, “Hey, we want to know if we should make this support app for patients with this therapeutic area.” And we then have conversations with these patients. And a lot of the time they’re saying, “Please don’t make us another app.” Like, I don’t [inaudible 00:34:11].

Jen Horonjeff:

But I’m glad that they did the work to find that out as they needed to validate that that was not the way to go. So at least they asked. But I think that these are the kinds of things that even from what is the right tech and I can’t [inaudible 00:34:26] describe what is the right technology for each individual but I think it also goes to show sometimes you can have technology and you’re still running up in these issues, which again is why patients should be involved in the design.

Jen Horonjeff:

So I’ll give an example, [inaudible 00:34:41]. So like I said, have lots of specialists, I got a new special appointment coming up and I had my Apple health kit. I had all my records from all my other epic portals pulled into it and I had [inaudible 00:34:57] specialists and they needed my health records. Well, we’re now a couple of days away from the appointment [inaudible 00:35:02] booked like six months out. And they said, “Well, we need your records.” I said, “Fabulous. Look, I got them.” And for those who are clinicians can already expect what’s coming. They say, “No, we need them directly from the doctor because we need the doctor’s notes.” Which as [inaudible 00:35:16] they don’t give them to you [inaudible 00:35:19]. And so, I didn’t have the doctor’s notes.

Jen Horonjeff:

Okay. Well actually you can also see what’s coming is that I needed now to be able to fax the old doctors [inaudible 00:35:30] hospital system, the request. And then they would mail me a CD-ROM of my records. And none of this could happen because, A, I don’t have those machines. It’s like I said, it was 2019 at the time but it’s just… I couldn’t do it. So I did everything right. I had the technology, I had the apps and yet I still couldn’t. So I had to cancel that appointment that I waited six months for. And another way that this isn’t working. So I don’t know what the right technology is but it’s not just about the standalone technology. The app was fine, all these portals, they’re fine. But do they talk to each other? Do they give me the information that I need so I have agency and autonomy? Or am I always tethered and fighting with the system to make anything actually happen?

Jen Horonjeff:

So it’s not just thinking about how do we ask patients to like, say if they like our UX and UI, it’s really going through the whole process and seeing if it works for the patient.

Eleanor Perfetto:

Yes. Great. Thank you. I have some questions that have started to pour in. So, let me take one of the audience questions for you. And I think it’s one that you can all jump in on. The person asking the question says that they’re enjoying this conversation and their question is related to several others that have come in. So would you speak to the interrelationship between culture health and healthcare delivery and how these variables are impacting patient engagement? And a few other individuals have also asked questions about engaging with senior, engaging with low income, engaging with minorities. And I think all of these are circling around the question that was asked about culture, health, healthcare delivery and how all of those variables impact engagement. So, Maria, I’m going to start with you.

Maria Lemus:

I think that’s a really important question. My feeling is that initially healthcare providers are trained in a certain way and it’s very narrow in scope. And they may not have that cultural humility, the cultural awareness and the cultural understanding of who the communities are that they’re serving. And so, that immediately puts a barrier between the communication. If for instance it… Well, I’ll give you an example. My mother had diabetes, she didn’t speak English to the day she died. She was at Kaiser. She went to Kaiser, they gave her something she’d brought it home, didn’t know what to do with it. They told her to go eat this food. And she said, “Am I going to eat that? Am I going to go to [inaudible 00:37:58].” It took us an intervention for somebody to come in and explain it to walk her through it and to explain the importance of it.

Maria Lemus:

That cultural piece is really important but I don’t want people to put the onus on… the onus should not be on the person. The onus should not be, why don’t you eat better? Why don’t you go walking? Why don’t you get better? Don’t you understand? I’ve heard providers say, “Well, why don’t they just do it?” And when you walk into a room and there’s already that assumption on the provider side and people can feel it, people can feel providers warmth or lack of… And immediately a barrier goes up, an emotional barrier. I think that I would really love to say that to providers, that how you walk into a room and how you breed and treat a person from that minute that they see you will impact the compensation later on. And not to mention, do they understand what you’re asking them to do? And do they have the resources for them? That’s why these programs in the community were built. A doctor said, “Oh, you must exercise.” And they say, go join the gym or go walk [inaudible 00:39:08] something.

Maria Lemus:

They don’t understand that that person may not have the facilities. They may not be safe where they’re from. Maybe they can’t walk by themselves. They don’t [inaudible 00:39:17] to walk with. There’s like those things that are really important, they affect our health and our wellbeing and understanding what that provider says. So I think it’s beyond cultural. It is looking at the social economic environment, where do they live? What’s their support system. And for seniors, being a senior, since I hit the senior age, the whole discussion about who we are and… We’re treated like… Years are so disregarded. I can’t tell you.

Maria Lemus:

The minute you tell people your age and if you’re ill, this whole perception that happens about seniors. And I think it’s disrespectful to have an assumption about a senior person, someone over, I guess who’s over 60, 55. And what is it that they can do and they cannot do? And what support system they have and they don’t have? I think we’re all going to get there, hopefully. And I think we need to build up those systems of support for our older adults.

Eleanor Perfetto:

Maria, I’m glad you [inaudible 00:40:21] because… And when you said that you were a senior, I thought, “Well, she doesn’t look 85 to me.” So how could it possibly be [inaudible 00:40:28]?

Maria Lemus:

72.

Eleanor Perfetto:

Well, even that. Stephanie, do you want to jump in? [inaudible 00:40:34] She doesn’t look like a senior to I agree, so don’t know what she’s talking about.

Stephanie Anderson:

I agree. I really like Maria, you saying that the onus should not be on the person, the individual. And I would balloon that to… Jen, you said that one of your least favorite words is noncompliant. One of my least favorite words in the way it’s used is trust in healthcare, because people keep saying that we need to get people to trust us. And by us, I mean the health care side and I completely disagree, completely. I think the onus is on healthcare to become trustworthy of people that want and need our services and our case. So I think that’s a launching point for us. And of course, that’s not a hit the easy button and that can happen next week. But I think if we don’t think about some of these foundational issues that Maria and Jen have both referred to and start focusing on fixing the foundation, nothing else on top of it, it’s like building a really high skyscraper.

Stephanie Anderson:

If you don’t spend the time underground setting the foundation, the whole thing will fall down. It won’t work over time. And so, I think that’s really key. I also think that… I’ve hopefully learned through listening that we can learn about cultural beliefs but that every single individual within any culture, seniors, race and ethnicity, whatever that is, doesn’t mean that every single person that identifies with that culture, that belief, has the same belief. And so, recognizing that even though somebody may try to put me in a group, that I may not identify with the same. And so, that speaks to… brings us full circle back to what all of us have said. Let’s talk to that individual about what’s important to them, what their beliefs are before we ever make any assumption.

Eleanor Perfetto:

Absolutely. Jen, did you have anything that you wanted to add on this question about culture and social determinants?

Jen Horonjeff:

I mean, I think that it’s been stated but it’s just recognizing and having that vulnerability to understand that you don’t have all the answers. I think you have to start there. And certainly, we need to be sensitive to these things. If not now, then when? There’s a lot that’s been happening, civil unrest over the past several months that is long overdue. And what we’re seeing is that companies are… Health systems are finally paying attention. The amount of requests that we get now to specifically talk to black and Latinx and native American communities, because people are saying like, “Ooh.” I guess we need to talk to them and to understand. And so, I’m just glad people are doing the work but that it takes that.

Jen Horonjeff:

And one of the things that I find myself saying over and over again, is realizing that these things take resources. And that people don’t a lot for this. And they think that people should just then come and give away their insights for free. And I know this is something that an actual health council really thinks about as well around fair compensation, which we all need to think about. So many people think, “Oh, it should be out of the goodness of their hearts.” Which many people do but it doesn’t mean it doesn’t have value. And that’s the part that is always frustrating. We pay everybody else in this ecosystem, statisticians, designers, other professionals but yet we think that patients just owe us something because we’re going to do good things for them down the line. And then that’s really what I think is unfortunately, causing more barriers to have those diverse perspectives, if we’re not doing the work to make sure that we’re making it accessible for these individuals and communities that have been left out to participate.

Eleanor Perfetto:

Yes. Jen, I would add to that. I think in the last few years on attitudes about compensating patients for their engagement activities has changed. It was probably about seven or eight years ago, I heard an individual from a pharmaceutical company say that they had a policy that they would not pay the patients that they were engaging to gather information from them. It was against their internal policy, because they believed that patients had to have skin in the game. And I informed that individual that they do have skin in the game. They have bones, they have circulatory systems, they have [inaudible 00:44:52], kidney parts, all of that is in the game for them. Yes. So fortunately, those policies have changed a lot.

Eleanor Perfetto:

Jen, started us off on a track of what barriers might be. And I’d like for us to have a conversation. What are the policy barriers that are out there that are keeping these kinds of programs, like the ones that Maria has been talking about and both of you have been talking about, Jen and Stephanie also. What are the policy barriers that we’re seeing out there that keeps this from happening and keeps the need from being translated into those policy discussions to move the needle forward on this much more universally than pockets here and pockets there. So Stephanie, let me start with you on that one.

Stephanie Anderson:

Sure. I’m happy to speak to this. I’m proud to have been asked to be part of HHS’s emergency declaration work under COVID. And it was… Could I use the word horrifying? Maybe, that speaking like what Jen is talking about, the idea of politicians saying, I think this is a good idea without asking the people that it’s going to impact without asking the people to do the work. So from that lens, I will bring a bright spot out and I’ll tie it to compensation for patients. Well, we also should be compensating community health workers and others that can develop these skills to supplement a community clinical model.

Stephanie Anderson:

And rather than… I’ll use advanced care planning, billing, for example. So there was reimbursement codes established several years ago to pay for advanced care planning conversations but it was physicians and other qualified professionals that were working with the physician, excluded the rest of the country that could develop expertise and skills and having these conversations. Very narrow focus and focused on a profession that doesn’t have the time to do this work and do it well. And so that’s just one example. But on the flip side of that, policymakers are listening right now with the pandemic. And they’re hearing and they’re working to make positive change in my opinion. So I’ve been pleased over the last several months with the progress that is possible now.

Eleanor Perfetto:

That’s great. Maria, I’m sure in your 20 years of experience that you were talking about that you’ve seen a number of policy barriers. Could you jump in?

Maria Lemus:

Well, thank you, Stephanie, for mentioning promotoras and community health workers. We started as primarily volunteers, the moms, the dads, the grandmothers but over 20 years, we’ve seen the quote, professionalization of our work. There is a continuum of promotoras in the community that’s still volunteer. And the community health worker that is an institutionalized position within an agency. But there’s still no respect for the work in the community. I want to go back to that dotted line and the CMS Ruling. So when the CMS Ruling came out, we were really hopeful, especially with whole person care. I really thought that whole person care would include the promotora and that there would be this dotted line to community and we would really be involved in.

Maria Lemus:

And so whole person care is with the institution. It is that person who goes out into the community but there is no really relationship to the promotora, to the community piece. And that’s where we talked about going to scale and how you can impact more people. Right now, I’ve seen this really in this policy, there’s allow for reimbursement within that circle, within that whole person care circle. But what does it do if a health worker like in LA with whole person care is from a community and they’re doing the same work but as the community promotora who is not being reimbursed, who doesn’t receive the base salary, who doesn’t have benefits.

Maria Lemus:

And so, there’s so much disparity between the application of policy and promotoras and community health workers, who we are training, the whole issue of certification, which we do not support. We think you should look at core competencies, not [inaudible 00:49:05] it draws a line in the sand. The whole professionalization of my work in the community by those who are not promotoras or community health workers, tend to intellectualize the discussion. And I think that to me is a big disservice is medical professionals or academic professionals taking what is a community activity and community work and intellectualizing it in a way that they think it will fit into a project, a program, instead of really talking to the community about how should it work best. There’s disassociation there.

Maria Lemus:

And there’s a disrespect for the community experts, the community expertise. When we don’t sit at the table asking us again, what do you think? How can this work better? How can we engage community? What do you suggest? We should be a [inaudible 00:49:56] in this process, instead of it’s decided it’s developed and then it’s completed. And they say, “Here, take it and go forth.” And nobody knows what to do because we have been part of the process.

Eleanor Perfetto:

Yeah, yeah. I do like you [inaudible 00:50:10] the whole person care idea. So not so much concentrating on what happens in a single health care visit but what happens when that person walks out the door from that visit and all of the services around them that needs to be connected. And policy barriers that we have for that.

Maria Lemus:

[inaudible 00:50:33]. I mean, promotora and community health work should be a center of that but we aren’t. [crosstalk 00:50:40]. Those are intellectual professional barriers that prohibit coming into our community and how can you help us?

Eleanor Perfetto:

Right. Jen, do you want to jump in on the policy barriers that you’ve encountered?

Jen Horonjeff:

Yeah. I think one of the policy barriers that bubbles up for me and we get questions about all the time is around some of these perceived barriers around working with patients, especially when it comes to drug development and what are FDA or EMA like regulations and things like this. And I think that’s what’s challenging, is everybody’s looking for… As Maris was just saying, like line in the sand in some regards, like, what can I do and what can I not do?

Jen Horonjeff:

And there’s not any specific guidance on these are the activities you can do. And I think that this… Because things aren’t spelled out and not that I’m saying that they need to be but that there are organizations that skew to one end where they say, “Well, then we won’t do anything because we’re too afraid to have our wrist slapped for something.” And so they take a much wider way of approaching patient engagement thinking, well, then I can’t talk to anybody because I’m too afraid that this is going to be [inaudible 00:51:47] out of compliance. So that’s one of the things that I see from a policy standpoint, that it is creating some of these perceived barriers for doing the work. If people actually stopped and understood what’s the actual spirit of what we’re trying to talk about when we think about drug development?

Jen Horonjeff:

Yeah. You’re not doing off label marketing. You’re not trying to get people to take your drug when they shouldn’t or get them into your trial if that’s not the appropriate mechanism for you to be doing this, that’s what these things are for. It’s not like if you want to understand disease burden in a therapeutic area that you’re not in yet, like bananas to think that that’s not allowed. And so, I think that those are some of the things from a policy standpoint and we just see people blowing it out of the spirit of what it’s trying to do.

Eleanor Perfetto:

Right. And I think we’ve come a long way, I think, in that area but we still have work to do. I think it was [crosstalk 00:52:38].

Jen Horonjeff:

What I’m just seeing is that you just see that there are organizations that just are on sort of a different end of the spectrum there, that some organizations are very innovation forward and they’re looking at it more critically to see, where is the line and work and can I go with this and they’re the ones that we kind of consider more innovation proof that are the ones that are just too afraid to take that next step.

Eleanor Perfetto:

We’ve skirted around this issue a little bit in some of the previous questions. And so, I’m going to ask maybe a little bit more directly, here we’ve been with COVID moving over our heads for most of this year. And it’s really put some pressures on, especially individuals who have chronic diseases disabilities with the ability to access care, their fear of what’s going on, their trust of the medical system but the healthcare system and care pressures. What happens with their visits and things like that. Could each of you talk a little bit about what you’re seeing or what you’re experiencing in terms of challenges and bright spots in what’s happening in engaging patients in their care during this time, we touched a little bit on digital health and there are other aspects of this.

Eleanor Perfetto:

And I think it’s that aspect of the care permissions that patients normally would have but then magnified because of what’s going on with COVID. Stephanie, do you want to jump in on some of that?

Stephanie Anderson:

Sure. I’m happy to. So unfortunately COVID has been the ideal use case for the importance of care planning and seeing the gaps when care planning and identifying goals, values and preferences hasn’t happened. But with crisis always comes opportunity and innovation. For those clinicians and lay people on the phone, we have a Respecting Choices, COVID resource toolkit that has some conversation guides and some other tools to help. What we have found is that COVID has made thinking about your own care planning real for many more people than ever before, because any one of us could get sick. Any one of us could end up on a ventilator, not being able to communicate our own wishes. And so, the innovation that we’ve seen outside of digital is that clinicians that have been repurposed because they weren’t as busy in surgery or they weren’t as busy and clinics, et cetera, were repurposed to have phone calls with residents.

Stephanie Anderson:

I have a testimonial from Michigan that they had a cadre of people that were helping care facilities, nursing homes, long-term care facilities, helping residents and facilities have these conversations. And they experienced nothing but relief by those residents. Relief that somebody was having this conversation with them, because they’ve been thinking about this. What if I get sick? Do I want to go to the hospital, et cetera. And being able to have those conversations and then bring their caregiver, their loved one, everybody in. So everybody’s on the same page. So it’s more about helping manage their symptoms and helping them to achieve their goals and their preferences rather than crisis decision-making when that person gets sick.

Eleanor Perfetto:

Maria.

Maria Lemus:

I am sitting here really sad because in our community, Latinos in particular, Spanish speaking immigrant Latinos, have less access to health services. And there are quote in this essential workers, either urban or rural areas. And so, my son has come from… They’re having to work or having to come home to a home that has multiple families that doesn’t have the resources. They don’t have health insurance and they don’t have the flexibility of going to my second home to write this out. I received a lot of calls from promotora and community members who are sick, who don’t have resources, who don’t know where to go, who don’t don’t even have food or losing their jobs. When they’re seeing that housing, the children are home, the adults are home, there’s all this drama in the house and they don’t know how to handle it.

Maria Lemus:

There’s no resources for them. So they asked us several… a while ago to develop something. So since the pandemic started communities like us have been providing webinars and trainings and now we’re in [inaudible 00:57:06], which are informal discussion groups, we’re providing resources on wellness issues, as well as what is COVID. We have a presentation that we did on the physiology of COVID. What is that little thing? How does it get in your body by medical doctors on our staff of promotoras. And so, we’re providing as much information. We and other community agencies are doing [inaudible 00:57:30] the state and the counties are not doing it. So there’s a real disparity between information, getting out to community in a way that’s understandable.

Maria Lemus:

A flyer is not going to do it. The CDC and the state have a lot of information but their standalone flyer kind of not interactive information. Communities are really stepping up and putting that information out in a way that’s [inaudible 00:57:55]. We’re also providing [inaudible 00:57:57] housing and support services but this has gone on for a long time and it’s going to go on longer. People are so sick right now and they’re afraid to step out and say something. Part right now in California, there was a very quiet list of immigration rights. Nobody talked about. There’s so much fear, so much anxiety, so much distressed and because of the election, all this information going across about it is, it isn’t safe wear a mask and don’t wear a mask. There’s so much conflicting information that my sadness comes from, there not being a coherent message.

Maria Lemus:

They’re not being support services, support for organizations like ours to really go deeper in the community. And there isn’t support for that promotora or a community health worker who are being laid off also. And don’t have anywhere to go or anything to do. We all have families, we all have children. I don’t even want to talk about what’s happening to our next generation of children who are in school. Distance learning is for those who have a computer and who have somebody who can help them with that. There’s so many implications to COVID for older adults who don’t have access, for special needs children. It’s so complicated and we’re not discussing it in greater detail. I will not help [inaudible 00:59:16] offering services to our [inaudible 00:59:18] organizations just to provide [inaudible 00:59:20] community.

Eleanor Perfetto:

Maria, that’s very silvering. Thank you for bringing that to our attention. We’re almost out of time. And so I know there are going to be people who are going to be dropping off and if you need to, by all means, my last question is just on, not really a question it’s to give each speaker an opportunity, just to say some final closing words. And so, I want to also thank our speakers very much for the fantastic job. Then I have many more questions that have come into the chat. This could have gone on from the easily another hour. I’m actually wasting a little bit of time to give each of you a few seconds to think of what you want your closing remarks to be. But I do want to thank the audience for being great about being engaged and providing these questions.

Eleanor Perfetto:

And I’m sorry that we were not able to get to all of them. [inaudible 01:00:11]. Jen, I’m going to begin with you with the closing remarks. Could you jump in please?

Jen Horonjeff:

Well, thank you again. Thank you to my fellow panelists. This has been a great conversation. My message is always the same and simple. Just ask patients and keep doing it and see that you need to do it early and often. There’s always a touch point that needs to happen regardless of the type of project you’re working on. And I said it before and I think to be focused on money but set aside the resources that you need to make this work happen. It doesn’t just appear out of thin air. So I just challenge people to continue to do the work and see it as a priority that it’s going to actually help you do your job better. If you’re serving your community the way that you say that you will.

Eleanor Perfetto:

Great. Thank you, Jen. [inaudible 01:00:52], that’s my mantra. One and done does not work. Maria, please jump in.

Maria Lemus:

Well, I know I just gave that sobering comment but I must say that what gives me a lot of hope and satisfaction is knowing that community’s going to figure it out. And I’m very hopeful for that. Like today, I’m in Madera, we’re doing a caravan. We’re getting information out, promotoras are doing it themselves. That’s their solution is to develop some really creative ways of helping our community. I would look to community. I would engage with those leaders, the real community grassroots leaders, the promotoras, the community health workers. Every state has this group, this informal group. I’m happy to connect people to the groups and the other states and happy to answer any questions we are here. When you’re around us, I just want you to learn about promotoras engage with us. We’re a very happy group. When you’re around promotoras, it’s like being around family. It’s like a [foreign language 01:02:00]. And a [foreign language 01:02:01] is a wedding. It’s a very engaging happy place.

Maria Lemus:

And because we’re naturally accepting people, I guess. But I encourage you to get to know who we are in the community to really engage with us and ask us to participate, ask us for advice and ask us how we can help.

Eleanor Perfetto:

Stephanie, close.

Stephanie Anderson:

Yeah. I just want to thank the audience for their interest and the voice to the patient and my ask or my challenge to you is to go back to whatever work you’re doing and see how you can elevate the voice of the patient, no matter what it is that you’re doing. So thanks for listening.

Eleanor Perfetto:

That’s a wonderful charge to the group. Kathryn, I’m going to wrap it up and turn it back over to you and hope everyone will help thank our wonderful panel.

Kathryn Martucci:

Staying on theme of asking the patients. We really want to make sure our programming is relevant to our audience. So please take the time to fill out a brief evaluation survey that you’ll receive immediately after the broadcast you back is really invaluable to us. And I also want to highlight our day three sessions and encourage you to join us again tomorrow at 11:15 AM Eastern time, as we continue to explore the voice of the patient. Thank you all again. Have a good rest of your day.