Episode 7, 23 min listen
In this episode, we'll meet Janice Tufte, who is working to make our healthcare and health systems more inclusive and equitable. We'll talk about patient-centered research and learn more about the role of ambassadors. While progress has been made, we'll also discuss the people who are still not well represented in our health systems and opportunities that remain in our own back yard.
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JANICE'S BIO
FULL TRANSCRIPT
-Introduction
Ame Sanders: [00:00:00] This is State of Inclusion. I’m Ame Sanders. Welcome.
What if everything in the medical system was designed around us the patients. What if everyone, regardless of their situation, was able to have the care they need? Today, we’re going to meet Janice Tufte. She’s someone who works tirelessly to make that happen.
So, Janice, we met through a mutual friend and getting to know you, I have to say it was exciting to learn that there is so much work going on in patient-centered research and patient-centered outcomes. This means that more and more people who usually have not had their voice heard at the table or been around the table are now being part of that process and are having their voice heard. That’s definitely inclusion in practice in my book. Could you give us some examples of who you think are people whose voices are not often still heard around the table when it comes to [00:01:00] healthcare and can you give us some ideas about how to think about inclusive healthcare more sensitively and more deeply?
Janice Tufte: Thank you, Ame, for having me on today. I’m honored to be a part of it. I am a Patient-Centered Outcome Research Institute Ambassador. I became involved in research in 2013, actually. And, really didn’t know anything about Health Systems research or health research.
-Voices Not Heard in Healthcare Process
So, since then I’ve been involved and very involved at a National level and I’d say there’s three or four communities that I see, or individuals, that really still need to be involved in research so they have better care and health delivery and their issues are addressed. And perhaps currently inclusivity and equity are certainly not where it could be. One such group is one that makes people a little edgy, and it’s individuals who have been incarcerated and or their families. This [00:02:00] greatly impacts the communities of color. It definitely colors the landscape of our health research dollars in the fact that their faces and their communities are not normally seen often at the table and they should be present in both as patient family advisors as well as providing input into research. And, historically there’s been issues, but they are a group that definitely we need to hear from. Their incarceration is happening at higher and higher rates. And they undergo more stress, and there’s a lot more that impact these communities than others.
Another community that’s a great impact is multiple chronic conditions. We only study one, historically one condition, but currently, with PCORI and the comparative effectiveness research, they might look at two. You know two different conditions and more than two different treatments. So, this [00:03:00] is a large group that is growing in the next two decades as Baby Boomers age, and there’s going to be more individuals with multiple chronic conditions as well as we see more in the infant and you know infant and maternal there’s more conditions.
Another group is just some of the specific I’d say, you know, I hate to use the term ethnic groups, but it would be so beneficial to have more diversity of sitting around the table at the conferences at leadership. So often still our leaders or the champions in the clinics and or the clinicians themselves don’t really match the patient’s themselves. And this is I hear this perhaps most often.
And another group is like I’m involved with the homeless. So, they definitely receive care but have more social determinants of health and more disparities than say the normal population [00:04:00] although everybody undergoes stress and trauma daily.
Ame Sanders: It helps us to think about broader groups of people and people that we might not have considered before because I personally wouldn’t have thought about the first group you mentioned which is those who are incarcerated in the complexity of dealing with health issues for them and for their family members, as well. So, those are great points to bring out.
Janice Tufte: I want to add it is formerly incarcerated, too.
-Patient-Centered Outcomes Research Institute (PCORI) and Ambassadors
Ame Sanders: Thanks, Janice, for reminding us of that.
I’m sure our listeners are interested in learning a little bit about you. And, just a minute ago, you mentioned that you are an ambassador for PCORI. So, quickly, can you share with the audience what PCORI is and what it means to be an ambassador with them?
Janice Tufte: Certainly. I’m proud to do that. I was on this research project that I mentioned. It was a Patient-Centered Outcomes Research [00:05:00] Institute Project where I read the grant before it was funded. I had no idea really anything about research and or PCORI. So, I’m just going to read their vision because that’s best stated I believe and PCORI vision is, “patients and public have the information they can use to make decisions that reflect their desired health outcomes.”
So basically, their mission is to better inform healthcare decisions, improve healthcare delivery and outcomes by producing and promoting high integrity evidence-based information that comes from and is guided by patients and caregivers in the broader healthcare community.
So, they not only include patients at all levels, it’s often multi-stakeholder [00:06:00] which can be communities as well as doctors and researchers. And, when you bring these people all to the table, sometimes you can have pretty good critical discussions where somebody might be more adamant on a subject than the other. I have honestly seen the needle move in certain areas, particularly in the area of multiple chronic conditions and low-value care – two areas. Meaning that you shouldn’t have an x-ray for your back just because you have a backache. You, first of all, try to do exercises, rest, ice, heat, and then perhaps physical therapy, and then x-ray. You know, very small percentage of people really have hurt their back. And so that’s low-value care. And with multiple chronic conditions, often when you have one problem, it just is exacerbated by another problem and how to address all of that.
So, as a PCORI Ambassador, I am able to share with other individuals the benefits of having the patient voice at the table [00:07:00], whether it’s as an advisor. And, encourage them to be involved with research because I was intimidated by that term as well. But we’re not going to change the dynamics of how healthcare delivery and outcomes are changing in a positive manner unless we give our voice and our concerns to the people that make the changes.
Ame Sanders: And, I want to just kind of dig in for a minute and make sure that I understand, and our listeners understand what that can mean. So, you’re not just talking about people, diverse people, being in a clinical trial for say drug research, or something like that. You’re really talking about being part of the design process for healthcare delivery, right?
Janice Tufte: Yes, and I appreciate you saying that. I’ve actually never been on the clinical trial, and I’m not involved with any type of pharma development. [00:08:00] I strictly am involved with health systems Improvement, which means from the top down. You know, it includes insured, it includes the government, it includes clinicians, it includes all the different stakeholders in the community because we really cannot make systemic change that will provide the outcomes that individuals need to know about their specific care unless they’re included.
Like NICU, you know infant Critical Care Unit. They’ve made huge strides. They’ve been going at this a little bit longer, I believe, than any other community. Where they are embedded in the health system and serve even on boards and have developed sort of like mentor to family programs within the hospital. And that’s one of the successes. They realize it can go across into other domains. Even your local small rural clinic where somebody has diabetes and having been able to have a mentor [00:09:00] and work with them on that and all the local parameters and challenges you might have. Having somebody to talk to about it, there could really help. And so, it’s really about a systemic change of helping and bringing attention to what is available at the community level as well as what actually your clinicians are able to do and what the patient responsibility is too because we need to be responsible, as well.
Ame Sanders: Most of us don’t think about how these processes are developed. We hear a lot and think about probably about drug development, but we don’t think and hear about how the processes by which we receive care are designed and developed, and how important those are to us, and to our family, to those around us, and to, you know, frankly the cost that we pay for healthcare. So, it’s interesting to hear you talk about that and to see how that is currently being done in a more inclusive way.
-Healthcare Challenges for People Experiencing Homelessness
And so, I know you’re a PCORI Ambassador, but I know it’s not the only thing you’re doing. There’s so much stuff that you’re doing, [00:10:00] it’s amazing, and have done. Let’s dig into a couple of them. I’ll pick one, and you can pick one, and we’ll see how we go from there. So, the one I want to pick is one you already mentioned, which is your work with homelessness. I was reading some of the statistics in the report on your website, and I was really surprised at some of the statistics.
So, one of the reports showed that people experiencing homelessness are generally sicker than their housed counterparts and more prone to death. So that statement didn’t surprise me so much. But the fact that the life expectancy is 48 years. Now, I have to say that was really shocking to me because the life expectancy for my neighborhood is 81 years. That’s a huge, huge difference.
And, then the other point was that being sick can make you homeless. So, the fact that 25 percent of the people living with homelessness have serious mental issues that probably wasn’t a tremendous surprise, but the discussion [00:11:00] about how health conditions, injuries, and illness how those can cause financial stress leading to bankruptcy and create financial challenges for a person or their family and lead them into homelessness. Thinking about that is a big issue.
And, then the fact that if you’re already sick, being homeless makes you sicker. It was obvious to me when I read that, but just thinking about the chronic health conditions that people have and how they’re unable to care for themselves effectively when they’re homeless. Someone with diabetes, that’s such a terrible disease, and then how difficult it is when you’re not able to manage that condition properly.
So, tell us a little bit about the work you’ve done in this area and the progress that you guys were able to make.
Janice Tufte: So, I have been involved historically with affordable housing recognizing that if you don’t have housing, then you’re not tackling one of the [00:12:00] biggest issues as far as health, right?
I then was asked a head of a housing organization wrote to me and said the Healthcare for the Homeless of Seattle King County is seeking new advisory governance board members. And so, I applied, and I got on. I was very excited. And so, it’s been eight months of really updating myself and realizing all the multiple complexities of our county that is the size of Rhode Island, by the way, and how and who we serve and what difference can we bring to the table as individuals who have experienced adverse events, ourselves? How can we bring that voice to the table? But basically, in our, I’ll just walk over really quickly. Our county provided visits last year to twenty-one thousand individuals who are experiencing homelessness and had two hundred and thirteen thousand visits. That’s a lot of visits.
They have over 200, I believe, sites. [00:13:00] You know, but that’s because we have a mobile van that can go from area to area to area some people camp out in the woods and they make they have a regular schedule that’s, of course, mutable to changes that might arise and then they serve individuals there.
But the homeless population is dying from the same reasons, more common diseases that the general populace of America is. This didn’t used to be that way. It used to be more communicable disease similar to developing countries. The whole globe now is addressing the same issues that we’ve addressed here in America, with the rates of obesity and diabetes and heart disease.
And so that the reason of mortality is those issues but trying to tackle [00:14:00] say a wound when you’re homeless is something else. You know, I mean, it’s very, very challenging. There’s an excellent article that just came out called “Heartbreaking”, in Cross-Cut,the local journal, and they share one man’s story of what he’s going through.
So, we have respite care also next to our public hospital. The beds, there’s never enough beds. So, the individuals that need to have medium, we call it a respite light, really don’t get care. So, they could be somebody that’s had a day of surgery, say a tumor removed that’s benign, but they’re not on chemo yet, right. So, they just go back into the shelter or their tents. And so, the healthcare for the homeless does everything they can to assist these individuals to get to their appointments to work in wraparound services, to try to get individuals who are un-housed into housing, where they can find healthy food, how to connect them with the services that are available. Some housing is up to 13-year waiting list, here. So, it’s [00:15:00] is a huge challenge. But basically, I’m in the advisory position, and I’m the chair of the program evaluation committee. So, we’re going to be developing some measures that we feel will really make a greater impact on the community but coming from the community themselves. What are their priorities?
Ame Sanders: It is very interesting to hear you describe the different kinds of situations that people experiencing homelessness can have to face which those are obvious because they are situations that we all face as we go through our own healthcare, but when you think about the complexity and the difficulty of facing that when you’re homeless or when you are, let’s say marginally housed and when you don’t have the support systems that most all of us have. That is so difficult [00:16:00] and risky because it complicates their ability to heal and to move on with their lives. So, I’m glad that you shared that with us. That was really important to hear and to think about because, I’ll be honest with you, I’m not sure a lot of communities even have what you described that your community has.
Janice Tufte: No, they don’t.
Ame Sanders: And so many of us don’t have any kind of respite care. You were talking about respite light, but we don’t even have respite care. So, I think it is important for people to be aware of this and to think about the kinds of services that might need to be established in their community to support what many of us see as a growing population.
So, thanks for sharing that.
-Connecting Special Populations to Resources - Emergency Muslim Resource Guide
Now, it’s your turn. Why don’t you pick one that you want to talk about, something that you’re working on?
Janice Tufte: I have a lot of very interesting research projects I’m working on, but I think I’m going to share a local project that I started 13 years ago that I’ve continued. And, I am a [00:17:00] Muslim and I recognize when back in 2000-2001 that there weren’t a lot of charities or services available specifically to the Muslim Community at the time for mostly could be women and children or single women that might have some different priorities or needs that weren’t met necessarily in the shelter systems or other areas. So, I started these resource guides called the Emergency Muslim Resource Guides. I’m the only one in the nation that’s doing it, actually. That was sort of what led me into this deeper work. I realized when I got involved with health systems improvement that those guides and they’re hyperlinked to all the services or most of the services in the community from domestic violence to healthcare, you know sliding scale healthcare dental care, eye care, to specific ethnic groups – Ethiopian, Pakistani, just [00:18:00] specific groups that they might be able to be in contact with, and then some of the local Islamic health services, and other social services, they serve. So, I recognized this was a need, and I started a website, actually won a website. I won it by putting my card in a fishbowl. So. sometimes it does pay off.
Ame Sanders: That’s Great.
Janice Tufte: So, I had to learn how to study how to make a, you know, I taught myself how to make a website. So, they’re housed on there, and that was I’ve kept the website going because I still get calls from Seattle Cancer Care Alliance or even schools, high schools, will contact me, you know, can you tell me more. I’ll get calls on once a week for different issues and because I’m known as a resource specialist in our community. So those resource guides mean a lot to me I do them for three counties, and I’m very happy that I’ve been able to you know, grow them and update them with [00:19:00] links to all the services you just click on the link you keep it on your desktop. Just this week, I had a call from the Sheriff’s Office. The sheriff, the chaplain, the head of the sheriff’s office of King County and also Seattle Fire. He was seeking a faith leader to be able to represent the Muslim Community when we bury the individuals who have experienced homelessness and or indigency over the last year. And, once a year, we bury them. A lot of people don’t know this goes on, but it’s, you know, it’s a real awakening, but 239 individuals will be, their cremains will be, buried in a week or two. And, I was able to connect them with people that couple different individuals that will be able to help with this prayer service. That’s the type of thing that I do on my own, but I have a lot of connections, and I’m a kind of encyclopedia of resources, and that’s really my skill set.
Ame Sanders: It sounds like you are [00:20:00] a person who connects a lot of different people to things that they need to find and so I’m going to ask you for some advice, now.
-Advice for Healthcare Leaders
Because you’ve worked on all these different projects, and you’ve seen so many different things, and you have this connection to so many different people, if you had the opportunity to whisper in the ear of every board executive of our local health systems around the country, what would you ask them to do in their community to become more inclusive and equitable?
Janice Tufte: Thank you for that question. I believe there’s a few things I would like to whisper into the ear. But, number one: I think I would say it’s very important to get uncomfortable. And, if you’re able to go visit any community, and or group of people, that you have never been immersed in, or around before, it’s very important. I [00:21:00] myself, have considered myself an ethnographer and there I’ve gone into communities where I don’t know anything about, research was one of them, and I knew nothing, and I was able to learn everything from the ground up by being immersed. I would whisper it’s important to get uncomfortable and immerse yourself in a community or group that you’re not familiar with. Go to them and don’t expect them to come to you.
Ame Sanders: That’s something we can all do. It’s not just the executive board members. I think it’s good advice for everybody to make ourselves a little bit more uncomfortable get a little closer to everybody in our community and understand what’s really going on and be part of that. That’s probably a good place to stop here. That’s some great advice. I always like to leave with some kind of good advice for everybody.
One thing I would ask you before we leave. Is there anything else that you haven’t had a chance to talk [00:22:00] about or say that you’d like to share with our audience?
Janice Tufte: Yeah, I would just like to say that I’m involved with research and I think that throws a lot of people off and they just can’t even figure out what a patient partner in research is. So, you’ll have my website www.janettufte.com, and you can look over a little bit and click on some of the links even in my CVM to see some of the different opportunities people have.
-Advice: Make a Positive Difference in Somebody's Life Every Day
But I really never anticipated in really a million years that I’d be where I was today, where I am today. And, it’s really by giving it my all, and you know, I think every single day I believe in making a positive difference in somebody else’s life, and I implemented this over a decade ago. No matter how small, it could just be a smile and might be opening a door. It might be connecting somebody but make a positive difference in somebody else’s life every day and [00:23:00] soon it’ll just come naturally. And, I truly believe that we can help build stronger communities and a better world by giving of ourselves for the hope for the better good.
Ame Sanders: Janice, thank you for sharing today, and we wish you the best as you go forward with the work that you’re doing.
Janice Tufte: Okay. Thank you so much and all the listeners, I hope you continue to follow Ame and her work because it is important. Inclusion and equity is something we all will never be fully versed on. There’s always something more to learn.
Ame Sanders: Thank you, Janice.
Janice Tufte: Thank you.
Ame Sanders: This has been State of Inclusion, join us again next time.
Hey, and if you enjoyed this episode the best compliment for our [00:23:39] work is your willingness to share these ideas with others. Thanks so much.
CONTRIBUTORS
Guest: Janice Tufte
Host: Ame Sanders
Social Media and Marketing Coordinator: Kayla Nelson
Podcast Coordinator: Emma Winiski
Sound: FAROUT Media