Redesigning Supportive Cancer Care Delivery -- Aligning Goals

Transcript

• 00:00Started so I thank you all so
• 00:03much for being here today.
• 00:05I'd like you to join me in welcoming Dr.
• 00:09Manali Patel, who is an associate
• 00:11professor of medicine at Stanford
• 00:13Medicine and a staff oncologist with
• 00:16the VA Palo Alto healthcare system.
• 00:20She earned her medical degree and master's
• 00:22in public health at the University
• 00:24of North Carolina at Chapel Hill,
• 00:26followed by Internal Medicine residency.
• 00:29Key Monk Fellowship and
• 00:31several research fellowships.
• 00:32In addition to obtaining her masters in
• 00:35health services research at Stanford,
• 00:37doctor Patel directs a research program
• 00:40that focuses on improving equitable
• 00:42delivery of value based cancer care.
• 00:44She uses principles of community based
• 00:46participatory research in her work
• 00:48and is the principal investigator
• 00:50of multiple externally funded awards
• 00:53such as the California Initiative
• 00:55to advance Precision Medicine,
• 00:56the patient centered Outcomes
• 00:58Research Institute.
• 00:59And the National Institutes of Health.
• 01:01Her expertise lies in designing,
• 01:03implementing and evaluating new
• 01:04models of care delivery with academic,
• 01:07community and VA oncology practices aimed
• 01:10to improve patient experiences with care,
• 01:13clinical outcomes and reduce
• 01:15unwanted health disparities,
• 01:17unwanted healthcare utilization
• 01:19and health disparities.
• 01:20Doctor Patel also serves on
• 01:22several national committees
• 01:23focused on improving cancer care delivery
• 01:25and value based care.
• 01:26She is the past chair of the ASCO
• 01:29HealthEquity Committee and the
• 01:31current chair of the ASCO serving the
• 01:33Underserved Task Force.
• 01:34So Doctor Patel will be delivering
• 01:37the Iris Fisher Lectureship today.
• 01:40The Iris Fisher Lectureship was
• 01:42endowed by Doctor David Fisher in 1999.
• 01:45Doctor Fisher has been involved with Yale
• 01:47School of Medicine for nearly 60 years.
• 01:50He was the first medical oncologist in
• 01:52the New Haven community and remained
• 01:54in private practice for 30 years
• 01:56before joining Yale's Cancer Center in
• 01:581993 as a volunteer and full time in
• 02:011995 when Doctor Fisher's wife Iris
• 02:04was diagnosed with sarcoidosis and
• 02:06incurable disease of the heart and lungs.
• 02:09Treatment decisions were weighed and
• 02:11balanced against the impact that therapies
• 02:13would have on Iris's personal wellbeing.
• 02:16It was Doctor Fisher's hope that this
• 02:18lectureship would serve as a lasting
• 02:19memorial to Iris while providing an
• 02:22educational opportunity for physicians
• 02:23and staff for the benefit of patients.
• 02:25We are grateful to Doctor Fisher
• 02:27for his generous
• 02:28support and we are grateful
• 02:29for Doctor Patel for delivering
• 02:30this lectureship today. Please join
• 02:32me in welcoming Dr. Manali Patel.
• 02:39Thank you. I know Michaela from many
• 02:41eons ago and so it's nice to see so
• 02:43many familiar faces and also so many new
• 02:46faces that I've known more recently.
• 02:47And thank you all for joining in person.
• 02:50I really want this to be more interactive,
• 02:52so please ask questions, interrupt me,
• 02:55push it up against the the bar.
• 02:57I really want you to think outside
• 02:59the box and really push me in
• 03:01terms of what I'm presenting today.
• 03:03So I'm going to give a brief background.
• 03:05Of my work and why we started a lot
• 03:07of work and supportive cancer care
• 03:10delivery and then I'm going to focus on
• 03:12multilevel stakeholder engaged research,
• 03:14giving an example in supportive
• 03:16cancer care delivery,
• 03:17which are aspects of palliative
• 03:19care and then focus in on the why.
• 03:22For me, I love being first.
• 03:25How many of you all love being first?
• 03:28We're all competitive,
• 03:28so I know many of us want to be first.
• 03:31I actually don't like being first.
• 03:35In the amount that we're spending
• 03:37for healthcare.
• 03:38And why are we last in terms of
• 03:42our spending for social services?
• 03:46How many of you all saw this
• 03:49over the weekend? NPR. Yep.
• 03:51I see some folks saying yes.
• 03:54For all that money we are
• 03:57inputting into healthcare,
• 03:58why are we doing so poorly?
• 04:04And many will say, well,
• 04:04it's our COVID-19 policies.
• 04:06I'm sorry, the trend was
• 04:09beginning long before COVID-19.
• 04:12And so could it be this longterm
• 04:15shortchanging of social services?
• 04:20And then you look at cancer,
• 04:22which is all of our areas of expertise,
• 04:26this is completely unsustainable.
• 04:30How many of you all drive on the highways?
• 04:35When there's a pothole that comes out
• 04:39of the same bucket of congressional
• 04:41funding as paying for healthcare.
• 04:44So if utilizing most of the gross domestic
• 04:47product on healthcare expenditures,
• 04:49we have limited for other
• 04:52social care expenditures,
• 04:55limited funding to fix our roads,
• 04:57limited funding through K through
• 05:0012 education. You name it,
• 05:05and despite all this money,
• 05:07we are investing into cancer care,
• 05:10especially at the end of life.
• 05:12We see really horrible care.
• 05:15How many of you all have had a patient
• 05:19that was unaware of their prognosis
• 05:22when they were nearing their death?
• 05:28Many of our patients are
• 05:30experiencing undertreated symptoms.
• 05:32We also see this large shift
• 05:33and I've heard about it.
• 05:35What you all are building here in this
• 05:37network is actually quite different.
• 05:39But out in the the real world
• 05:42outside of Connecticut,
• 05:43we see this huge shift of care from
• 05:47community based settings into these
• 05:49large hospital conglomerates and then
• 05:52we also see tacked on facility charges.
• 05:55So not only is care then centralized.
• 05:59And away from people in their communities.
• 06:02But then it's also more expensive
• 06:06for the same product. Fascinating.
• 06:11Then my own area of expertise is disparities.
• 06:14We see persistent disparities
• 06:17by socioeconomic status, race,
• 06:19ethnicity,
• 06:20demographic characteristics that
• 06:21are largely due to the lack of
• 06:25expenditure for social care services.
• 06:27That continue across the continuum.
• 06:31How many of you all have seen this graph?
• 06:34Robin Yaborov, good friend of ours,
• 06:37the American Cancer Society,
• 06:39I love this U-shaped curve because
• 06:42it shows you and I know when I walk
• 06:44away they're not going to be able
• 06:45to hear me on zoom, is that right?
• 06:48But what's wonderful about it is it
• 06:50shows you this peri diagnostic phase.
• 06:53There's this huge uptick and uprise.
• 06:56That coincides with when patients have
• 06:59the worst experiences with their care.
• 07:02So not only when they're becoming
• 07:04diagnosed and going through the flurry of
• 07:07activity during diagnosis with treatments,
• 07:11but then also at the end of life,
• 07:13you see this sharp uprise and it doesn't
• 07:15matter how long your survival is,
• 07:17you see this same pattern.
• 07:20And I think she revised this most recently.
• 07:23So the only thing that's changed essentially,
• 07:24is the Y axis. It's much more expensive now.
• 07:28How many of you all know of Don Berwick?
• 07:32He challenged us in 2008 and said
• 07:35he was a medpac commissioner and
• 07:38thought about these disruptive
• 07:39innovations in in, in healthcare.
• 07:41Why is it that in every other sector,
• 07:45when a new technology is developed,
• 07:47the cost come down, you think about
• 07:51the first iPhone first CT scanner.
• 07:55But in medicine, it tends to be the opposite.
• 07:57We're we don't have very many interventions
• 08:01that achieve this whole triple aim
• 08:03of improving population health,
• 08:05bettering patient experiences
• 08:07and reducing total cost of care.
• 08:10You may see some interventions
• 08:12that may do 2 out of the three,
• 08:15but not interventions that
• 08:18can achieve all three.
• 08:20And he challenged us as a nation and
• 08:22said if we really want to ensure.
• 08:25That our population is better overall and
• 08:29that we have some GDP left for social cares.
• 08:32We really have to tackle this
• 08:35cost problem in healthcare,
• 08:37but also think about our interventions such
• 08:39that we're not decreasing the quality.
• 08:45I know Makayla knows this,
• 08:46but community based participatory research?
• 08:50Raise hands if you know this about it, okay?
• 08:53I learned a very critical lesson,
• 08:56so I went into medical school at UNC and I'd
• 09:00really hoped to be a global practitioner.
• 09:03And I went into the traditional medical
• 09:05school training and it was right across the
• 09:07street from the School of Public Health.
• 09:10But there was little interplay.
• 09:12I love UNC.
• 09:12I'm a Tar hill born, Tar hill bred.
• 09:14When I die, I'm a tar hill dead.
• 09:17But what I hated about medical
• 09:19school and what led me to think.
• 09:21Whether medicine was really in it for me,
• 09:23is this the right career,
• 09:25was that there was this
• 09:27lack of focus on prevention,
• 09:29but this huge focus on treatment,
• 09:31and I'm going to talk a little bit
• 09:33later about why potentially that
• 09:34may be in this consumerist society.
• 09:36And so I did my master's in public health.
• 09:38I took a year off, year off, right.
• 09:40It was actually a very difficult
• 09:43year in the public health degree
• 09:45space and did my practicum.
• 09:46So as part of your thesis,
• 09:48you have to write up a practicum.
• 09:50And I decided to go back to a
• 09:52community that had worked in as
• 09:54an undergrad and in Honduras.
• 09:55And as one of the key principles
• 09:58of community based participatory
• 10:00research is this understanding
• 10:02that communities know the problem
• 10:04and they also know the solutions.
• 10:07And so as researchers and as
• 10:10budding medical physicians,
• 10:11we always like to do what
• 10:14I call global tourism.
• 10:16Where we go in, we take our ideas,
• 10:18hey, we have this great idea.
• 10:20We're going to input it in your system
• 10:21and not really knowing if that's
• 10:23really what the community needs.
• 10:25And so I thought I would really
• 10:28focus on diabetes, food insecurity,
• 10:30housing and security in this community.
• 10:32But instead I heard from the community
• 10:35Members what the main problem was,
• 10:37was cervical cancer,
• 10:39women dying from cervical cancer.
• 10:41Now,
• 10:42this was long before the connection
• 10:44with HPV had been made.
• 10:46And what they said was we have lots and
• 10:50lots of women dying from cervical cancer.
• 10:54Makes sense.
• 10:54Now,
• 10:55this was a migrant farm working population.
• 10:57They were coming to areas of North Carolina,
• 10:59going back and transmitting HPB.
• 11:02And thus lots of women were
• 11:04dying and there was no screening.
• 11:07So I came back to the United States and I
• 11:08said, Oh my gosh, what did I get myself into?
• 11:10Right?
• 11:10I know nothing about cervical cancer.
• 11:12I'm an internist, right,
• 11:14budding internist.
• 11:15So I came back and asked 2 budding
• 11:18OB gine Med students if they would
• 11:21help me and we went back and we heard
• 11:24from the community members and they
• 11:27said how do you screen for cervical cancer?
• 11:31Why can we not provide the screening?
• 11:35How ingenious?
• 11:38What differentiates me as a medical student
• 11:41from community members in the community?
• 11:43How can we?
• 11:44You know,
• 11:44the question came up.
• 11:45Well,
• 11:46we don't have the infrastructure.
• 11:48We've got sticks.
• 11:50So we made wooden stirrups.
• 11:53We have headlamps.
• 11:55And just as easily as we were trained in
• 11:58medical school to conduct PAP smears,
• 12:00so can community members in
• 12:02their own community be trained.
• 12:05But who's going to pay for it?
• 12:07So the other principle of public
• 12:09health is the number needed to screen
• 12:12and the number needed to treat.
• 12:14And it was a very eye opening experience for
• 12:17me to think about following the dollars.
• 12:20If you're really going to make an
• 12:23intervention sustainable, that's great.
• 12:25As a UNC practicum,
• 12:26I've got a small bucket of funding.
• 12:28I can come here, do some pap smears, go back.
• 12:31What's going to happen when
• 12:32that funding is gone?
• 12:34The program ends.
• 12:38So to create a sustainable model,
• 12:40you have to engage other
• 12:41people in the community.
• 12:43Where were people going when they
• 12:45were diagnosed with cervical cancer?
• 12:47Well, they weren't diagnosed.
• 12:48They were actually going to the
• 12:50local Planned Parenthood and dying
• 12:52in that facility from symptoms,
• 12:54from other disease burden, from bleeding.
• 12:59And all of that cost was being
• 13:01borne by this facility.
• 13:03Guess what?
• 13:03I bet they would pay
• 13:07for the number needed to screen
• 13:09to do all of the samples.
• 13:11Evaluate all the.
• 13:12Coposcopies and also conduct
• 13:15the Coposcopies now,
• 13:16over 20 years later.
• 13:19Guess who's teaching UNC students
• 13:21in the summer how to do Pap smears?
• 13:26Sustainable model not dependent on us,
• 13:29and the Community knew the solution.
• 13:33Had I gone in with my own idea,
• 13:35it would have turned into a very
• 13:36different project that may have
• 13:38been completely meaningless.
• 13:41I went to Stanford.
• 13:42I'm looking at Pam because,
• 13:43you know, Stanford is a silicon.
• 13:44How many of you all have been to California?
• 13:46Silicon Valley.
• 13:48It's like community based
• 13:50participatory research with A twist.
• 13:52Is this design school?
• 13:53So many of you have an iPhone, right?
• 13:56What was ingenious about Stanford, right?
• 13:58They are always trying to
• 14:00create ways to make money.
• 14:01So this huge startup culture,
• 14:03they created the school then that would
• 14:05teach people about how to make companies
• 14:07that would get more market share.
• 14:09So you involve the consumers, right?
• 14:11If you have a product like an iPhone,
• 14:14maybe go out and codesign it with the people
• 14:18that would potentially buy the iPhone,
• 14:20such as then you're going to
• 14:22design A product that's going to
• 14:23be more applicable to other people,
• 14:25like the people that you designed it with.
• 14:28But if you think about what they do,
• 14:29it's actually the same concept of
• 14:31listening to consumers and building this
• 14:34out now if you think about supportive
• 14:37cancer care and trying to achieve.
• 14:39Actually,
• 14:40not even supportive cancer care,
• 14:41but just care in general
• 14:44and healthcare in general.
• 14:45There has to be an alignment of
• 14:49goals and also financial payment
• 14:53models across each of these groups.
• 14:57But where we're lacking in Healthcare is
• 14:59that there's always this misalignment.
• 15:01And so I'm going to walk you through
• 15:03one example where we focused in on that.
• 15:06Uptick of EU shaped curve,
• 15:08the right side of EU shaped curve
• 15:10because at the end of life many patients
• 15:14are experiencing unwanted acute care use,
• 15:16unwanted healthcare expenditures
• 15:18at a very high cost.
• 15:20So that's low yield if we want to
• 15:23try to achieve the triple aim.
• 15:25So we started off with this combined
• 15:28Amalga rhythm of the design school
• 15:31and the community based participatory
• 15:34research methods.
• 15:35So we asked patients and caregivers,
• 15:37which is clearly what you would do
• 15:39with community members and CBPR,
• 15:41what were the barriers and the
• 15:43challenges and what would some
• 15:45solutions look like if you were
• 15:47to create a system focused on end
• 15:50of life cancer care delivery that
• 15:52looked very different than the
• 15:53one that you're currently in.
• 15:55We also did the same with clinicians
• 15:58and then we included a critical piece
• 16:00that we learned from the design school,
• 16:02which was this idea of payers.
• 16:05As well as policymakers.
• 16:10And surprising to me is a wideeyed,
• 16:12bushytailed fellow who was
• 16:13kind of in my little realm,
• 16:15really not thinking about
• 16:17the financial misalignment.
• 16:19What I heard from clinicians
• 16:21and from healthcare systems was
• 16:23this is the right thing to do,
• 16:25but if we were to reduce emergency
• 16:28department visits and hospitalizations
• 16:29like what Hospice and palliative
• 16:31care are meant to help with?
• 16:33Local concordant care,
• 16:34usually patients will choose not to be in
• 16:37a hospital setting at the end of life.
• 16:40There goes our bottom line.
• 16:43And I was shocked, but it made sense.
• 16:49And so we heard from communities that they
• 16:52wanted to be a part of the the, the product.
• 16:54They want to codesign the product.
• 16:56They are often not involved in
• 16:58palliative care efforts and we heard
• 17:00from patients that it was easier.
• 17:03To talk to people in the waiting
• 17:05room about their prognosis and their
• 17:07questions about end of life, cancer care,
• 17:12what questions they should ask.
• 17:13They were getting activated in the waiting
• 17:15room by other people in the waiting room,
• 17:18peers, and they felt less comfortable talking
• 17:21about these issues with their clinicians.
• 17:25And then the clinicians of course said lack
• 17:27of time and also some considerations that
• 17:30palliative care and Hospice weren't quite.
• 17:33Read they weren't quite ready, right?
• 17:34Patients may not quite be ready
• 17:36for some of these services.
• 17:39And so we have the same players,
• 17:40same stakeholders.
• 17:42Create a model where we long
• 17:46before the A/C A in 2012.
• 17:48We had them design an ideal approach
• 17:52that would align their goals and also
• 17:54would be aligned by financial values.
• 17:56And what they landed on was
• 17:59training a community health worker.
• 18:01For a peer support navigator to help
• 18:04them understand concepts of values,
• 18:06goals, preferences outside of our 15 to
• 18:0930 minute visit in the oncology clinic,
• 18:14they also had wanted someone to call them.
• 18:16And again this was long before E pros right?
• 18:18E pros have not been up and
• 18:20running at this point 2009,
• 18:222010 by the time we published this
• 18:24right it was many years later,
• 18:26but they wanted people to
• 18:28call them and ask them.
• 18:30About their symptoms rather than
• 18:32reactively calling us when their
• 18:35symptoms were too far advanced.
• 18:37And then again,
• 18:38before the COVID pandemic,
• 18:40we heard that and had talked with
• 18:43individuals in Australia and the UK who
• 18:46were receiving chemotherapy on mobile vans.
• 18:48Yet what we're doing in the United States
• 18:50is we're centralizing care and actually
• 18:52removing sites that may potentially
• 18:54be more convenient for patients.
• 18:56You could leverage telemedicine and deliver.
• 18:59Low risk chemotherapeutics in
• 19:03essentially rooms that are half the size,
• 19:05quarter of the size,
• 19:06which is what was also being done
• 19:09in parts of Nebraska in the VA with
• 19:11a telemedicine oncologist that was
• 19:13leveraged in to ensure no complications
• 19:16and now that makes less disruptive.
• 19:18But at the time this was really a no go.
• 19:21Many people thought that the third
• 19:23model was really not very idealist,
• 19:25it was a little bit too idealistic.
• 19:28And so we decided to test this.
• 19:30What we heard from clinicians was
• 19:31we need to see a randomized control
• 19:34trial before we're willing to engage
• 19:36in any of this work.
• 19:37And so this was essentially our
• 19:39framework was if you were to remove
• 19:41many of the barriers in the yellow,
• 19:43potentially you could get to
• 19:46improving patients,
• 19:47understanding about advanced care planning.
• 19:50You could also improve symptom management
• 19:52by proactively reaching out to patients.
• 19:55And then hopefully ultimately
• 19:56improve goal concordant care,
• 19:58which many of you know is hard to measure.
• 20:00Many in the palliative care space,
• 20:01there's a lot of debate about
• 20:03measurements of goal concordant care
• 20:05and how one would do that given the
• 20:07fact that goals change so often and
• 20:10you certainly can't measure it once
• 20:11patients have already passed away.
• 20:12And the surrogates may be able to help you,
• 20:15but it's really unclear so that
• 20:17this idea of being
• 20:19able to achieve goal concordant
• 20:21care is really addressing something
• 20:23that may be hard to measure.
• 20:25And so we tried again as a fellow,
• 20:27I thought, let's test all three together.
• 20:29But I already told you,
• 20:30most people said no way to the last one.
• 20:32Like telemedicine.
• 20:33What, on a mobile van?
• 20:35No way. Right?
• 20:37We're not giving chemotherapy in places
• 20:39that are not in our infusion center.
• 20:41But shockingly,
• 20:42I also heard from places that we are
• 20:44not going to have a lay health worker,
• 20:46community health worker talk to our patient
• 20:48about what a surrogate decision maker is.
• 20:51We don't want anyone to talk to our
• 20:53patient about advanced care planning.
• 20:55You're going to remove hope.
• 20:57And so we also got a lot of pushback on
• 21:00even testing the Community health worker
• 21:02advanced care planning intervention.
• 21:04So I thought, well,
• 21:05let's split up the model.
• 21:07We'll test each one individually and we'll
• 21:09go to a place that's more integrated.
• 21:11So the VAI was a clinic clinical
• 21:14fellow there and really never thought
• 21:16about having a fulltime VA job.
• 21:19But what I was really shocked
• 21:20by is many of the innovations
• 21:22happen in the VA telemedicine.
• 21:23We've been using it for decades in the VA.
• 21:26Many of our packed models of utilizing
• 21:29peer support were developed at
• 21:32the VA and you can get innovations
• 21:34if you pair with operations,
• 21:36you can really jumpstart these
• 21:39out-of-the-box clinical ideas and
• 21:40get them into practice very quickly.
• 21:43And there's also this alignment of
• 21:46finances because they serve as a pair.
• 21:49So there was a desire by the VA.
• 21:53To improve not only veteran experiences,
• 21:55to improve their health outcomes,
• 21:57but also to lower costs.
• 21:59So there was a clear alignment
• 22:01and they said yes, let's do it.
• 22:03So we trained this lay health worker to
• 22:05conduct a series of segments either by
• 22:08telephone or in person with patients.
• 22:11And so the first segment was really
• 22:13just discussing and developing rapport.
• 22:15The next few segments over time it was
• 22:17a six month intervention would be about.
• 22:19Tailored messaging about goals and
• 22:21values and preferences and giving people
• 22:24the time they need to make these decisions.
• 22:26So that means starting way upfront
• 22:28from when people were actually
• 22:30having conversations about this at
• 22:33a point which made some oncologists
• 22:35very uncomfortable.
• 22:36So we would start at diagnosis
• 22:38if not before diagnosis,
• 22:39before the 1st oncologist visit.
• 22:42Discussing this is part of usual care
• 22:46and the last was helping patients.
• 22:48With advanced directive completion.
• 22:50Completion of documents like
• 22:51the Stanford letter project,
• 22:53which wasn't in existence at the time,
• 22:55developed by BJ Perry Acoyle
• 22:57using sudor Rebecca Sudor's work,
• 23:00but really ending up really completing
• 23:02those documents but also getting
• 23:04the tailored support they needed.
• 23:06And it's easier.
• 23:07If you just hear this, let me see.
• 23:11Not sure how the video will work?
• 23:14Let me see if I can.
• 23:24Let's see,
• 23:42let's see.
• 23:50Is there anyone that can help? Do you
• 23:54think anyone can help me with the video?
• 24:08What was that?
• 24:11This one? The right
• 24:17one? More.
• 24:20Let's see.
• 24:23Is your primary
• 24:24goal to fight parts to
• 24:25make sure it's out of yours?
• 24:28Really, it's
• 24:30your primary goal to fight
• 24:31parts to make sure it's out of.
• 24:35I
• 24:37don't want to die. Bloomberg meets
• 24:39regularly with healthier checks.
• 24:43I'm sharing. I'm sharing the sharing,
• 24:51if not shared one. That's that's sharing and
• 24:57there on the last one.
• 25:01Just click that. OK.
• 25:08Thank you. You gotta get
• 25:11it again. It came on.
• 25:16No, that's fine. That's fine.
• 25:18Just go to share screen. Sure sense.
• 25:23Now you can select the then you
• 25:27go share. Yeah.
• 25:37Is your primary goal
• 25:38to fight this?
• 25:39To make sure it's out of your system?
• 25:42I don't want to die.
• 25:42I got lots of things to do.
• 25:45Blumberg meets regularly with healthcare.
• 25:47Coach Laviba share a
• 25:49compassionate ear shares role,
• 25:51is to provide the big picture
• 25:53to help patients think
• 25:55about how cancer treatment.
• 25:56Will fit in with the way they want
• 25:58to spend the rest of their lives.
• 26:01Can I learn a little bit more about
• 26:02what it is that you want to do? Well,
• 26:05I wanna do some more traveling.
• 26:08I wanna spend time with my kids getting a
• 26:13little emotional. What are they
• 26:16getting from you that they don't
• 26:19get from anyone else? Well, they
• 26:21get someone who's
• 26:22actually helping them through their care.
• 26:24With me they're actually discussing things.
• 26:26What they're feeling, what they're
• 26:27going through, what they want to do,
• 26:32what they what they understand
• 26:34is their prognosis.
• 26:35I just decided not to go through
• 26:37the treatment patients like
• 26:3947 year old Raphael Arias,
• 26:42a former army police officer.
• 26:44Arias is suffering from a recurrent sarcoma
• 26:47and has already lost a leg to cancer.
• 26:50Right now we just.
• 26:52I'm trying to do take advantage of
• 26:54the fact that I'm still here and
• 26:57trying to do something so all I can.
• 27:01Why have you decided not to have?
• 27:02Chemotherapy made me sick and
• 27:07within a week we had to stop it.
• 27:10So as difficult as it was,
• 27:12I just decided not to go through with it.
• 27:17You want to have the highest quality
• 27:19of life for as long as you have life,
• 27:21correct?
• 27:21With a little bit of time that I have left,
• 27:26my wife and I have plans of maybe
• 27:28doing some things before my departure
• 27:34is your primary goal.
• 27:35And that was essentially a
• 27:387 minute flip. So Al Jazeera America
• 27:40had heard what we were doing and
• 27:42before we had any results back,
• 27:44they thought it was so fascinating that
• 27:46someone who is not trained medically.
• 27:48Was having what would otherwise be considered
• 27:51a medicalized conversation with patients.
• 27:52Why do we medicalize these conversations?
• 27:55Patients really do need the time
• 27:57to be able to engage in this work.
• 27:59And while I've had clinical equipoise
• 28:00as to whether or not it would work,
• 28:03we certainly knew that there were
• 28:04facets like these stories where she
• 28:06had spent so much time with patients
• 28:08who would have otherwise in my clinic,
• 28:10had received chemotherapy and
• 28:12gone through with it.
• 28:13What patients then said was
• 28:15we didn't want to disappoint.
• 28:17Doctor, so and so
• 28:20it's very multi,
• 28:22it's very complex and so we decided
• 28:24to test this in a randomized trial.
• 28:26We heard from oncologists that we
• 28:29were potentially causing harm and
• 28:31that we would potentially buy this
• 28:33intervention cause people to die faster.
• 28:34So we had to dispel that myth.
• 28:36We also wanted to see if it was feasible,
• 28:38can we improve goals of care conversation.
• 28:41So we randomized patients stage three
• 28:43and stage four disease also with
• 28:45recurrence of cancer agnostic to
• 28:47disease into this intervention that
• 28:49you just saw clips of versus usual
• 28:51care and we measured goals of care
• 28:54documentation as well as patient
• 28:56experiences and total cost of care.
• 28:59We randomized 213 patients
• 29:00in this consort diagram.
• 29:02You see 100 and 805 respectively in
• 29:04the control group in the intervention.
• 29:06It was blocked randomized
• 29:08by cancer diagnosis.
• 29:09And because it was in the
• 29:10VA and we had claims data,
• 29:11we could conduct an intent to treat analysis.
• 29:13So despite loss of follow up,
• 29:16we were actually able to complete
• 29:18the entire ITT for the patients
• 29:21that were initially randomized.
• 29:23And what we found was shocking to me.
• 29:27This is goals of care documentation
• 29:28by the oncologists,
• 29:29many of whom were opposed to this model,
• 29:32many of whom didn't even
• 29:34know that it was happening.
• 29:36It was in the background.
• 29:38No interaction between the
• 29:39Community health worker,
• 29:40lay health worker and the oncologist,
• 29:43but yet patients were being
• 29:46activated to tell their physician,
• 29:48I don't have the goals of care
• 29:51document and can you print it out
• 29:54because the community health worker
• 29:56was helping to engage patients in
• 29:58these conversations saying if your
• 29:59oncologist doesn't bring it up,
• 30:01you need to bring it up.
• 30:03And we found that this also led to
• 30:05improvements in advanced directives.
• 30:07As we anticipated,
• 30:08if you have tailored assistance,
• 30:10you're more likely to be able to complete
• 30:12the advance directive documentation.
• 30:13And this changed over time.
• 30:15We had to dispel the myth that
• 30:17because you have an advance
• 30:18directive that you can't change it.
• 30:20You actually can change it.
• 30:21So it's a living,
• 30:22it's meant to be a living document.
• 30:24And so we would update the advance
• 30:28directive as People's Life course changed.
• 30:31We found that patient satisfaction went up.
• 30:33This was using the consumer assessment of.
• 30:35Of healthcare providers and
• 30:37healthcare systems General survey,
• 30:39the question of would you recommend
• 30:41care on a scale of zero to 10?
• 30:44How satisfied are you with
• 30:45your clinical team?
• 30:4610 being a very high satisfaction,
• 30:480 being low satisfaction and what we
• 30:51found over time in the blue line is
• 30:54that the intervention group improved
• 30:56and the control group decline.
• 30:58We did not cause harm.
• 31:00So unlike Jennifer Tumels model,
• 31:02which I'll show you,
• 31:03we improved palliative care.
• 31:04We didn't find a survival benefit,
• 31:06but we dispelled the myth that we
• 31:09were making people die faster.
• 31:13But what we showed was at the end
• 31:15of life there was better care,
• 31:1995% reduction in acute care use,
• 31:21almost doubling of Hospice utilization and
• 31:24the baseline in the BA is high as you know,
• 31:26because we can provide Hospice
• 31:28concurrently with care.
• 31:30Why that's not closer to 100%.
• 31:32There are many issues,
• 31:33but we were able to actually
• 31:36double that to close to 100%.
• 31:38And we found in the last month of
• 31:40life not only were total cost,
• 31:42median total cost lower,
• 31:44but you see that variation.
• 31:46This is amazing to me is how
• 31:50narrow that variation is.
• 31:53You've removed the outliers 1 outlier,
• 31:571 outlier can do you in.
• 32:01That variation is really what
• 32:03we want to try to improve upon.
• 32:06And so at the same time,
• 32:07I wanted to test the symptom
• 32:09management model, right,
• 32:10the Community health worker conducting
• 32:12this proactive symptom assessments.
• 32:13It wasn't a novel idea.
• 32:15Kurt Kerlan Key and the VA had
• 32:17been conducting this with a nurse.
• 32:19What was novel about it is that
• 32:20you would have a lay health worker,
• 32:22community health worker conducting this.
• 32:24It was novel at the time because we
• 32:26really had very limited proactive
• 32:28reach out to patients across the
• 32:30United States to assess symptoms.
• 32:32And so I went to Southern California
• 32:35and interestingly enough I had
• 32:37been giving presentations about
• 32:39this model hoping that we would
• 32:41find pilot test partners.
• 32:43Most of the time I got the door slammed in
• 32:45my face again was was before the A/C A,
• 32:47so payers did not want to be involved
• 32:50in something that seemed like thanks
• 32:52to Sarah Palin going to death panel.
• 32:55Even though we had payers at
• 32:57the table designing the model,
• 32:58they did not want to be involved in it.
• 33:01And so care more the woman that was
• 33:03in charge of care more at the time,
• 33:05laviba, she ended up having breast cancer.
• 33:10And so this story resonated with
• 33:12her on a personal level.
• 33:14And she said, look,
• 33:15if you can find an oncology
• 33:17practice that's willing to help,
• 33:19we will do one piece of your model.
• 33:21Actually,
• 33:21we'll do the advanced care planning.
• 33:23And we'll do the symptom management again.
• 33:25We didn't have the data from the
• 33:27VA because it was at the same time,
• 33:29well,
• 33:29we found an oncologist practice
• 33:30that was willing to do the symptom
• 33:32management piece.
• 33:32Again did not want to have anything
• 33:34to do with the advanced care
• 33:35planning and they said we need a
• 33:38per member per month fee to do this.
• 33:41This was before OCM,
• 33:42the oncology care model,
• 33:43which now reimburses or had been
• 33:45reimbursing for some of these
• 33:47services and now there's a new OCM.
• 33:49So this was before that time and
• 33:51it was kind of unprecedented for a
• 33:53payer to be providing a lot of this
• 33:56upfront payment to many of these practices.
• 33:59And then we did a back of the envelope
• 34:02calculation and there is a misalignment.
• 34:04All this work that we do in our clinics
• 34:06to try to save patients symptoms,
• 34:09try to improve their symptoms,
• 34:10it's going to reduce emergency
• 34:12department visits and hospitalizations.
• 34:14And if it's not an integrated system,
• 34:17guess what? You've input a lot of effort
• 34:20into something that you're getting no
• 34:22reimbursement for as a practicing oncologist.
• 34:25So we took that model to care more and said,
• 34:27look, you're getting this much,
• 34:29if it were to work, which we think it will,
• 34:32you're going to get X percentage, right?
• 34:33We think that we're going to save
• 34:3520% net implementation costs.
• 34:36So if we think that you're
• 34:39going to save the money,
• 34:40it's important that you
• 34:42pay for the intervention.
• 34:43And we're going to make it a low cost
• 34:45intervention using lay health workers,
• 34:46not a nurse sled model.
• 34:48And you can create a shared savings model
• 34:51where a third will go back to the patient,
• 34:541/3 will go to the clinical team
• 34:56and a third will go into you.
• 34:58And they agreed the oncology practice
• 35:01then had one more negotiation.
• 35:03They wanted all market share.
• 35:06Every beneficiary from this Medicare
• 35:08Advantage group was going to go singly
• 35:12in Fullerton to this one clinic.
• 35:14Care MORE agreed,
• 35:17so we tested it.
• 35:19Lay health worker was embedded,
• 35:21paid for by care more advantage,
• 35:23Medicare Advantage embedded in the clinic,
• 35:26did weekly phone calls with patients.
• 35:28Initially we started with patients
• 35:30that had advanced stages and then we
• 35:33moved more upstream to patients with
• 35:35all stages after a couple of years
• 35:37because the clinic really liked it.
• 35:38And we showed in two they would
• 35:41review symptoms using esass,
• 35:42how many of you all know esass
• 35:44Edmonton Symptom assessment system,
• 35:46it's a scale of zero to
• 35:4810 with multiple symptoms.
• 35:49I think there's nine or ten.
• 35:50And then there's also another category
• 35:5310 being worse symptom symptomatology
• 35:55and sympto burden 0 being less symptoms.
• 35:59And what we found was essentially
• 36:01for patients and we built this
• 36:02into the protocol that any score
• 36:04of four above or that changed by
• 36:06two points from that assessment.
• 36:08Would then get triaged and reviewed
• 36:11with a nurse practitioner.
• 36:12The nurse practitioner,
• 36:13FTE was also covered by the payer.
• 36:19And then we decided, wait a minute,
• 36:21the nurse practitioner is
• 36:22reviewing all of these symptoms.
• 36:24Let's build out an automatic referral
• 36:27with waived prior authorization.
• 36:29Because we're working with the payer,
• 36:30we can do that.
• 36:31For symptoms that are escalating,
• 36:33they would go directly to
• 36:35palliative care and bypass the
• 36:36nurse practitioner review.
• 36:38Or they would go to the behavioral
• 36:40health services because we were also
• 36:41screening for anxiety and depression
• 36:45in a cohort study of 800 patients.
• 36:48The the cohort of patients that
• 36:51were receiving intervention versus
• 36:52a match cohort in the year prior.
• 36:54We found for Edmonton symptom
• 36:57Assessment System survey assessment
• 36:58tools that essentially the
• 37:00main scores reduced over time.
• 37:02In this 12 month intervention
• 37:05the control group went up.
• 37:07And we also found, not surprisingly,
• 37:10better anxiety and depression,
• 37:15no harm. So we also can't
• 37:20replicate Ethan Bosch's work.
• 37:21But we did find, again,
• 37:23very similar reductions.
• 37:24And again, this was for all patients,
• 37:27not just patients with advanced stages,
• 37:30but reductions in acute care use and
• 37:32reductions in total costs of care.
• 37:35And for the cohort of
• 37:36individuals that had died,
• 37:38we found very similar findings
• 37:39as the VA where at the end
• 37:41of life it was better care,
• 37:44better experiences and lower
• 37:46total cost of care with again
• 37:48drawing in drawing your attention
• 37:50to the variation in cost.
• 37:54And so we just finished randomized
• 37:56trial of both interventions.
• 37:57So layering the the advanced care
• 37:59planning and the symptom management,
• 38:02which is always how it was supposed to be.
• 38:05Right. You can't keep people out
• 38:06of the hospital if you're not.
• 38:08And that may be their goal if they're
• 38:11not adequately and appropriately
• 38:13managed for their symptoms.
• 38:16So they really go hand in hand.
• 38:18And so we conducted a randomized trial.
• 38:20Now this was a different patient population.
• 38:22It was privately insured.
• 38:23So we did it in the VA with
• 38:25advanced care planning.
• 38:26Intervention with the Medicare
• 38:28Advantage group was mostly
• 38:30older Hispanic Latinx adults.
• 38:32In Fullerton, CA and here now,
• 38:35it was a younger population
• 38:37that were privately insured.
• 38:39We randomized in the acute care use and the
• 38:43healthcare use goal was our primary outcome.
• 38:45We randomized a total of 128 into
• 38:48the intervention and conducted an
• 38:51ITT and we found,
• 38:53lo and behold,
• 38:54even better reductions in acute care use.
• 38:57And this was not just at the end of life,
• 38:59this was at 12 months.
• 39:00I think there was a very small
• 39:02proportion of patients that had
• 39:04actually died in this study.
• 39:05And so consistently we found robust
• 39:08effects that were consistent
• 39:09across multiple studies.
• 39:11And better yet,
• 39:12we also found that there was a net savings
• 39:15where a lot of interventions like I
• 39:18talked about before tend to not save money.
• 39:20They may be effective,
• 39:21but they may not save money is because your
• 39:24implementation inputs are too expensive.
• 39:27But we had a very low cost,
• 39:29high touch.
• 39:31Patient centered solution that utilized
• 39:34perhaps people that can reach patients
• 39:37better than we as clinicians can and
• 39:40that was a tough pill to swallow.
• 39:41I think for many of us that think we are
• 39:44the greatest thing next to slice white bread,
• 39:47but we really do.
• 39:48It takes a team and what it
• 39:51did was it enhanced provider
• 39:53relationships with their patients.
• 39:54So we have another study where we
• 39:56looked at across all the stakeholders
• 39:59what their experiences were.
• 40:01And we pulled the oncologist
• 40:03across 12 different sites and
• 40:05overwhelmingly many have chosen to
• 40:08continue utilizing this model because
• 40:10of the benefit for not having to
• 40:12do when your patients are better
• 40:15managed from a symptom perspective,
• 40:17you get that opportunity to really connect
• 40:20with patients on a different level.
• 40:22And so many of you know that equity is,
• 40:25is really why I went to medical school.
• 40:28And taking evidence based interventions
• 40:32and plugging and chugging them into
• 40:34community settings is not a one size fit all.
• 40:37So a labor union organization
• 40:39called Unite here,
• 40:40how many of you have heard of unite here?
• 40:42Oh great.
• 40:43So unite here essentially provides
• 40:46a labor union organization for
• 40:48hourly low wage workers.
• 40:51At McCormick we all go to McCormick.
• 40:54Most of us,
• 40:55many people that work in
• 40:56McCormick are part of this union.
• 40:58Hotel workers, casino workers,
• 41:01restaurant workers,
• 41:02taxi drivers.
• 41:03And unfortunately because they
• 41:05are hourly wage workers,
• 41:06they don't have health benefits.
• 41:09So as part of the Union,
• 41:10what they decided was that they were going
• 41:13to skim off a very tiny fraction of people's
• 41:15paycheck and put it into a health fund.
• 41:17And so the health fund really
• 41:19wants to provide high value care,
• 41:22meaning very high quality at low cost.
• 41:26And they have the Union backing them, right?
• 41:28They're part of the union.
• 41:29The Union is very and the Members of this
• 41:32Union very much trust unite your health.
• 41:35There's this engender trust
• 41:36because it's one and the same.
• 41:38And so they had heard of the work and
• 41:40they knew that at the end of life for
• 41:43many of their hourly low wage workers,
• 41:45they were having poor experiences,
• 41:48especially as they were dying.
• 41:50And so they asked us if we
• 41:52could embed our model.
• 41:53And so I'm glad I did that public health
• 41:56degree because I took a step back and said,
• 41:58Okay, well, let's,
• 41:58let's see how we would embed
• 42:00this model in your population.
• 42:02So we created a Community Advisory Board.
• 42:04So I pulled people from
• 42:06Atlantic City and Chicago,
• 42:07as well as the Union members
• 42:09and the Union President.
• 42:11And can someone take a wild guess
• 42:12as to what a patient told me when
• 42:14I talked about this intervention
• 42:16about a community health worker,
• 42:17a healthcare advocate,
• 42:18reaching out to them to talk
• 42:20about advanced care planning?
• 42:25I didn't know either.
• 42:26I was actually very shocked.
• 42:28What they said was you try having
• 42:31a conversation about goals of
• 42:32care when you're worried about
• 42:34where your family is going to
• 42:37live and how you're going to get
• 42:39food on the table for your family.
• 42:41You're asking me to do something that
• 42:43I think is going to hasten my death.
• 42:46Then who is going to provide for my family?
• 42:50Eye opener.
• 42:52So guess what, we tabled the
• 42:56intervention and we focused on
• 42:59addressing health related social needs.
• 43:01We integrated that.
• 43:02We didn't table the advanced care planning,
• 43:04but we integrated the health related
• 43:07social needs first and foremost
• 43:09and we used community engagement to
• 43:12build partnerships with industry.
• 43:15One issue is transportation.
• 43:16How are people going to get to
• 43:18and from their clinic visits?
• 43:19Well, guess what?
• 43:21Lift can provide free transportation,
• 43:25better value, better quality, lower cost.
• 43:28If people are adhering to their treatments,
• 43:31people have no place to live.
• 43:34Local Housing Authority let's
• 43:36build in places for people to
• 43:38live while they're getting care.
• 43:42Let's think about ways
• 43:44to invest in social care,
• 43:47because then as an organization,
• 43:48you, not your health, has.
• 43:50Individuals with lots of diseases,
• 43:52not just cancer. Cancer is 1 slice.
• 43:55If we invest in social services,
• 43:58we are likely going to do better for not
• 44:01only our Members but also reduce costs.
• 44:04And so we built this in and then we also
• 44:06heard from unite your health that there
• 44:08were some crooked groups and some ecologists,
• 44:11that perhaps we're not providing the highest
• 44:14and most evidence based care for patients.
• 44:17And that is an area of research for me where
• 44:19we know patients by race and ethnicity,
• 44:21socioeconomic status,
• 44:21where you go determines the care you get.
• 44:25And so making for example,
• 44:27the Yale out in the community is a
• 44:32fantastic idea because providing
• 44:34evidence based care is a way to
• 44:37overcome many of the disparities.
• 44:39It's not due to patient level factors.
• 44:43I know we go there.
• 44:45It's actually due to what people are
• 44:47receiving once they're diagnosed.
• 44:48And now we've shown study after
• 44:50study after study that if you get
• 44:52the care that you need and the
• 44:53care that's evidence based,
• 44:55your outcomes are the same,
• 44:56if not better, then more white,
• 44:59more affluent white individuals
• 45:01who usually do much better.
• 45:03And so we picked through.
• 45:04I went through their claims,
• 45:06I went out to Atlantic City in
• 45:07Chicago as a fellow multiple times,
• 45:09looked over claims data and tried to
• 45:12identify the highest performing providers.
• 45:14And in Atlantic City there was
• 45:16an MD Anderson clinic.
• 45:17It was very costly but it also
• 45:21provided evidence based care.
• 45:23And so the union said Okay Manali,
• 45:25redesign, let's redesign the benefits.
• 45:27Okay, what do we need to do?
• 45:28And I said let's not reduce market share.
• 45:31People want a choice.
• 45:32I want a choice when I'm diagnosed
• 45:33with cancer and that's what we heard
• 45:35from the Community Advisory Board,
• 45:36you want a choice of where to go,
• 45:38but so don't remove the choice
• 45:40and have a narrow network.
• 45:42But rather expand the network and
• 45:44give people an incentive to go to
• 45:47the higher providing provider.
• 45:48So let's waive copays for people
• 45:50that choose to go to MD Anderson
• 45:52in the clinic in Chicago,
• 45:54your copays or waive,
• 45:57you still have choice,
• 45:58but you also get additional funding.
• 46:00If you choose to go to this,
• 46:01you know you have less out of pocket costs.
• 46:04So as part of this study,
• 46:05the Union asked us to do a randomized trial,
• 46:08which was actually very shocking to me.
• 46:10But they really wanted answers
• 46:12quickly and so we randomized patients,
• 46:13they would everybody got that free
• 46:15benefit of free cancer care services.
• 46:17So as part of usual care,
• 46:19every patient received that extra
• 46:21benefit of waiving costs.
• 46:23But every all the other patient
• 46:25population that were randomized
• 46:26received the added benefit of the
• 46:29Community health worker screening
• 46:30for health related social needs,
• 46:32conducting advanced care planning
• 46:33and symptom management.
• 46:35We randomized 160 across Atlantic
• 46:37City and Chicago.
• 46:39And this just goes to show,
• 46:40I don't want to go over all the details,
• 46:41but a very different patient population,
• 46:44younger patients, more females,
• 46:46high proportion of Latinx, black
• 46:49patient populations and Asian subgroups.
• 46:51Which made us have to translate all
• 46:54of these documents and to also hire a
• 46:56lot of Community health workers from
• 46:59communities that spoke the patient's
• 47:01preferences of language and that was costly.
• 47:05Unite your health, did it.
• 47:07Again, very low annual household incomes
• 47:10and very low educational attainment
• 47:13and what we found using the functional
• 47:15assessment of cancer therapies general,
• 47:16was that patients health related
• 47:19quality of life improved.
• 47:20Makes sense.
• 47:21If you're screening for
• 47:23health related social needs,
• 47:24you're likely going to have
• 47:26better quality of life.
• 47:27How much of this was from the other
• 47:29interventions is what I get asked
• 47:30all the time. Why does it matter?
• 47:32Shouldn't we be doing this in our practice?
• 47:37I think so. And parsing out one piece
• 47:39from the other doesn't really make sense,
• 47:41especially when you think
• 47:43about the patient population.
• 47:44And then if you look at the similar
• 47:46reduced reductions in emergency
• 47:49department use in hospitals,
• 47:51but you see that the higher there's a
• 47:53higher mean with this patient population,
• 47:55very complex patient population
• 47:57utilizing acute care services more so
• 48:01than patients in our other studies.
• 48:04But over all stages,
• 48:05so again this was all stages of cancer,
• 48:07I guess 12 month intervention,
• 48:09we found reductions in total cost of care.
• 48:13Is this scalable?
• 48:16We're now launching a 24 site
• 48:19cluster randomized control trial.
• 48:20To me doing usual care is kind of unethical.
• 48:26We know that palliative care
• 48:28in these services work.
• 48:29So comparing to usual care is really
• 48:31kind of a no go for me anymore.
• 48:34And so we've now started embedding
• 48:36technology delivered tools where the
• 48:38same exact tools that the Community
• 48:39health worker uses in her interactions,
• 48:41his or her interactions with the patient,
• 48:43the patients will receive
• 48:45passively in the control group.
• 48:48And I also want to make sure that
• 48:50we've got every single type of facility
• 48:53where people receive care included.
• 48:55So we've got community practices,
• 48:57we've got integrated systems,
• 48:58we have the VA academic systems and
• 49:01also our safety net hospital systems.
• 49:06Years later, Don Berwick wrote
• 49:07another article and I'm almost done
• 49:10so we can take questions in 2023,
• 49:13if you all have time.
• 49:15Just a couple of months ago,
• 49:16I would love for you to pick up that
• 49:17article and juxtapose it against
• 49:19what he wrote in 2008 because
• 49:22it's very sobering, sombering.
• 49:27Even the title the existential
• 49:29threat of greed in the United States,
• 49:31United States healthcare system.
• 49:34And in that article, it makes me question,
• 49:37are we going in the wrong direction?
• 49:40Is it worsening?
• 49:43Because now we see how many
• 49:44of you all have seen what ASCO
• 49:47has done for Wellness burnout.
• 49:51Of course our ask the President
• 49:53knows you closure ears.
• 49:53When I used to want to talk about this,
• 49:55if we don't get at the root of the problem,
• 49:58everything else is a Band-Aid.
• 50:00The problem is the healthcare system,
• 50:04the way that it's financed.
• 50:05I did not go into medicine to be
• 50:08a paper pusher and to argue with
• 50:12payers about prior authorization
• 50:14for services that I know work,
• 50:17nor did I go into medicine.
• 50:20To make a huge buck.
• 50:21And I know that may be different,
• 50:23but I also don't think that as a society,
• 50:26capitalizing off of people when
• 50:28they're sick is where we want
• 50:30to go or where we should go.
• 50:34And now hospices
• 50:37sadly profiteering why
• 50:42this is shocking to me.
• 50:44It's really not because we're part of
• 50:47the American ecosystem where there's
• 50:49this desire to want to capitalize,
• 50:52but it really makes our,
• 50:53our jobs harder as physicians to
• 50:55think about what we were trained in
• 50:57medical school not to think about,
• 50:59but it's impacting all of us.
• 51:02This is the why for me,
• 51:03why do I keep going even
• 51:04though it seems like, you know,
• 51:06the system is a big wave
• 51:08and crashing us all over?
• 51:09I really don't feel that way.
• 51:10I'm actually still bright eyed
• 51:12and bushy tailed and naive.
• 51:14How many of you all know Paul,
• 51:14Farmer,
• 51:17humanitarian. And for me,
• 51:19this is the why health really
• 51:22is a fundamental human right.
• 51:25It's not something that we if we
• 51:28live in the right neighborhood,
• 51:30if we have the right parents,
• 51:32if we have the right education,
• 51:33if we speak the right language,
• 51:36that we may or may not be able to
• 51:37attain our highest health possible.
• 51:43And why also is because we see change.
• 51:46The A/C A was huge,
• 51:47opened up the door to being able to
• 51:49take away this idea of death panels.
• 51:51We actually get reimbursed for having
• 51:54conversations that should be part of
• 51:56the fabric about how we deliver care.
• 51:59But also remember that site that
• 52:00I told you in Fullerton that said
• 52:02no way to advance care planning.
• 52:03We'll do the symptoms stuff if
• 52:05you give us a bunch of money.
• 52:06They now are advertising on their website.
• 52:11This program is part of one of
• 52:13their critical services and
• 52:14care more decided to pull out.
• 52:16They said we're not paying for it anymore.
• 52:18But guess what?
• 52:20This oncology group is continuing with it
• 52:22now and has expanded across three states.
• 52:25A couple of months ago,
• 52:26we trained all of the health
• 52:28advocates at unite your health.
• 52:30So all of the health advocates
• 52:32across the United States, Las Vegas,
• 52:34New York, Boston, the food industry,
• 52:36they were all trained on this model and.
• 52:39I firmly believe in advocating policy change.
• 52:43We always forget about the outer bucket.
• 52:46But it's so important to think
• 52:48about how to advocate for change.
• 52:50So with community partners,
• 52:51we were knocking on the door in
• 52:54Sacramento every month saying community
• 52:57health workers need to be reimbursed.
• 53:00And so now,
• 53:01as a medical benefit,
• 53:03as of July,
• 53:03the work that my community members
• 53:05and Community health workers
• 53:07are doing are now reimbursed.
• 53:11I have a lot of other projects now focused
• 53:13on that other side of EU shaped curve,
• 53:15really trying to improve equitable
• 53:17evidence based care delivery.
• 53:19And for me it really is people over profits.
• 53:21And I think all of you in this room,
• 53:22because you came to this talk number one,
• 53:26really believe the same thing
• 53:30when you think about the people at the table.
• 53:32We've got the governor's office,
• 53:34you can see the big capital,
• 53:36we've got the county.
• 53:39Department of Public Health,
• 53:42you think about who's at the table,
• 53:44who even knows that a table
• 53:46exists and who's not there,
• 53:48who may not know that the table exists.
• 53:49Bring them all together and you can
• 53:53create sustainable interventions
• 53:54like I talked about in Honduras.
• 53:56And that's it.
• 53:57That's a wrap.
• 54:05We have a couple time. This is our lab.
• 54:06And so if anyone wants to check it out,
• 54:08please, we've got a bunch of other
• 54:10studies ongoing and then certainly
• 54:12some questions. Yes, in the back.
• 54:15Oh, thank you Sir.
• 54:25One of the beauties of
• 54:26community that expresses
• 54:28the support you said really get to vote yes
• 54:32really the whole 1000 importance of that.
• 54:34Did you identify any particular cultural
• 54:36barriers and or facilitators within
• 54:38the community that she's engaged with?
• 54:42Very good question.
• 54:43So the question, did everybody
• 54:45hear that maybe for online folks,
• 54:47the question was did you with
• 54:50community based participatory research
• 54:51really knowing the communities
• 54:53and if we identified any cultural
• 54:55barriers or facilitators in the
• 54:57communities that we identified with.
• 54:59So yes, and I'm really glad that
• 55:01you asked that question because
• 55:03there were some considerations
• 55:05especially among some of the
• 55:07Asian patient populations about.
• 55:09Patients may be potentially not
• 55:10wanting to engage in discussions,
• 55:12but that their caregivers would.
• 55:14And so we expanded the intervention
• 55:17to allow for cultural humility.
• 55:19If that is how that is in their family,
• 55:23who am I to say I want to talk
• 55:26to the patient directly about
• 55:27what the patient wants?
• 55:28That is how and especially in my family,
• 55:31the same goes in my family.
• 55:33We want the patient to be engaged,
• 55:35but is that how,
• 55:36if that's how they've set up.
• 55:38And that's how they've been
• 55:39that is part of their culture,
• 55:41in the fabric of their culture.
• 55:42We should try to begin to tweak
• 55:45our interventions again,
• 55:46using that same concept of
• 55:48not going in with blinders,
• 55:49of thinking that this is the
• 55:51way this intervention should be,
• 55:52but rather thinking about how
• 55:54to codesign the discussions.
• 55:56Facilitators was faithbased,
• 55:59so in Atlantic City we found
• 56:01community partners that were
• 56:03faithbased organizations across
• 56:05multiple demographic groups.
• 56:07Who really came to charge and would
• 56:10talk about filling out five wishes?
• 56:13In their sermons on Sunday?
• 56:16We found Hindu priests discussing
• 56:18advanced care plan and we provided
• 56:20them with the materials and so
• 56:22they expanded that reach and
• 56:25normalized these conversations
• 56:26long before we had to even engage.
• 56:29Very good question.
• 56:30Did that answer some of your questions?
• 56:37I mean the technology,
• 56:39you never go by higher funding costs.
• 56:42Yeah. How do we change capitalistic
• 56:47model we see in there versus
• 56:49every other technology sector?
• 56:51Like why are they so different?
• 56:52Is it beer and black information?
• 56:54Like why are they so different and
• 56:55how do we kind of break the picture?
• 56:58Good question.
• 56:58So the question was why, you know,
• 57:00in the technology sector there's this desire.
• 57:03Please correct me if I'm wrong there.
• 57:05Essentially you can.
• 57:06Make products that can then lower costs.
• 57:08But in the healthcare sector,
• 57:09we're not there yet and it's all
• 57:11because it's misaligned incentives.
• 57:13If you think about the different players,
• 57:15we haven't come together to align.
• 57:17Consumers really drive change.
• 57:18And So what we really need to do is
• 57:21galvanize like we are in these communities
• 57:23and start thinking together and
• 57:25collectively about how to change that.
• 57:27You know, I, I hate to go there,
• 57:29but a universal payer system,
• 57:33you see how it works in the VA.
• 57:36And there are challenges that every
• 57:37study we've done in the VA and outside
• 57:40the VA shows that people within
• 57:41the VA have less disparities when
• 57:43they get care within the VA system.
• 57:45And now with the Mission Act that
• 57:46allows our veterans to receive care
• 57:48in community based facilities,
• 57:49we see that when they use community based
• 57:51facilities, their outcomes are worse.
• 57:55It is a way to financially
• 57:58incentivize and to align goals,
• 58:02not to be a reductionist,
• 58:03but that's one example.
• 58:07A comment and a question.
• 58:10So the comment is that I worry a
• 58:13little bit about putting patients in
• 58:16the middle of the cost situation,
• 58:19partially because the costs
• 58:20are in many ways artificial.
• 58:22And I think the real solution is of
• 58:25course that we should have coverage
• 58:27for everyone and and then we should
• 58:30work on figuring out the cost.
• 58:32The and and I fear that some people
• 58:34will just say that's just too much
• 58:36money for me and for maybe the wrong
• 58:40reasons choose not to get care.
• 58:42The question I have though is to what extent?
• 58:46I know in in in at least one of the
• 58:49studies there wasn't interaction
• 58:50between the Community health
• 58:52worker and the medical team.
• 58:54To what extent in other
• 58:56situations have you had?
• 58:57Contact between those two,
• 58:58yeah I actually that's a good question.
• 59:00So the question was to what degree
• 59:02does the Community health worker
• 59:04engage with the clinical teams.
• 59:06I think in the in the ideal scenario
• 59:08you want a highly functioning team
• 59:10where there is communication across both
• 59:13unfortunately and and the majority of
• 59:15the sites have chosen that even if they
• 59:17haven't chosen that initially they've
• 59:19come around to really engaging the
• 59:21community health workers part of the team.
• 59:23Where we've seen struggles is in
• 59:25that example in Atlantic City and
• 59:26Chicago where the oncologist really
• 59:28did not want to be involved at all.
• 59:30And so we said, Okay,
• 59:30we're going to do it with the payer alone
• 59:32and there was limited communication,
• 59:34but we also want to make it such
• 59:36that patients are activated.
• 59:38These interventions, the,
• 59:39the proactive symptom assessment,
• 59:40I think should be longitudinal,
• 59:43but the advanced care planning,
• 59:44you really want to give patients
• 59:45the tools to be their own advocate.
• 59:48And so in those situations and most
• 59:50of our studies are really just limited
• 59:52with that intervention you see,
• 59:54which I didn't show is an enduring
• 59:56effect of the intervention long
• 59:57after the intervention has ended.
• 59:59And so we,
• 01:00:00we just looked at the VA study now
• 01:00:0310 years later and we found actually
• 01:00:06really big differences at the end
• 01:00:08of life for the patients that died,
• 01:00:10perhaps indicating that the skills
• 01:00:12that patients were learning are
• 01:00:14like riding a bicycle.
• 01:00:15You want patients to activate for themselves.
• 01:00:17And so in those situations where
• 01:00:19we don't have the Wellfunctioning
• 01:00:20team in the communication,
• 01:00:22we have the Community health worker
• 01:00:24activate the patients to call
• 01:00:26their clinician and make sure that
• 01:00:28these symptoms are addressed.
• 01:00:30So they say,
• 01:00:30I'm going to get off the phone with you,
• 01:00:32you're going to call your clinician
• 01:00:33going to hang up.
• 01:00:34I'm going to call you again in
• 01:00:35an hour and see if you did it.
• 01:00:37And so it helps the patient to then
• 01:00:39begin there to be their own voice.
• 01:00:41So that they're not reliant on someone
• 01:00:43else mediating that relationship.
• 01:00:45And the reason that's important is
• 01:00:47because cancer is one part of what
• 01:00:49a patient may be diagnosed with.
• 01:00:51And so you want them to have skills
• 01:00:53that are going to supersede the
• 01:00:55small narrow piece of medical
• 01:00:56conditions that we all are are
• 01:00:58seeing at the surface and treating.