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Future View Productions PAM19 Breakout Day 2 Navigating Complex Choices
SEPTEMBER 20, 2019
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Transcription is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings.
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>> EMCEE: Let me try that again. Good morning, everyone. I would like to welcome you to
this panel called Navigating Complex Choices: Shared Decision‐making Across a Shared
Continuum. I want to start by thanking Bridget Gaglio for setting up this phenomenal panel.
You guys are in for a treat. You picked well this morning. I can guarantee. We have a great
panel. Just to give kind of you an idea of the format, what we are going to do‐‐ the presenters
are going to speak for about 15‐ish minutes. We will have time for one or two clarifying
questions. But, what is great about this panel is that we have 30 minutes at the end for a really
meaningful discussion. If there are more global questions, we can leave that to the end for part
of a discussion. If you have clarifying questions, we will have time for a couple of those. Just to
make things really easy so that everybody is addressed similarly and we don't have differences
based on gender or other issues, we will call everyone by the speakers by their first names. We
are group oriented and you can call all the speakers by the first names today.
Let's get to it. You are not here to listen to meet talk. You are here to listen to Kathleen Ted
present Increasing Knowledge in the Use of Birth Control among Latina Adolescents using a
Computer‐based App. She is presenting with Rosario Rico
>> KATHLEEN:
[Whispering]
>> EMCEE: We are having some technical difficulties here. Mine just showed up like‐ Oh.
There we go.
>> KATHLEEN: Thank you for inviting us here to present. This has been a really exciting journey
that we have. I am so delighted to have one of our representatives from our community‐based
partnership Rosario Rico here as well. I will go ahead and get started. We have nothing to
disclose. To give you a little bit of background since all not all of you are in the realm of
adolescent health. As you probably have heard on the news, there have been dramatic declines
in adolescent pregnancy across all racial ethnic groups. Yay. However, there continues to be
disproportionately high rates among Latina adolescents. As a result, they really face unjust
burdens of the adverse health consequences. The majority of adolescent pregnancies and
births are unintended. At the time of first sex, most adolescents do not use any form of
contraceptive or an ineffective method. They are really not prepared.
Disparities are driven by a number of factors. Differential access to sexual healthcare services
and information is key. We also acknowledge that there are also a complex number of the
social determinants as well. When Latino adolescents access care, they are more likely than
whites to receive inadequate care. Providers often lack time, skills, and comfort discussing sex
and contraception with our younger populations. In adolescent health, teenagers are not the
poster children of pediatrics. When you add additional layers on top of that, they face a lot of
barriers to care. Adolescents and especially those from Latina and Hispanic backgrounds face
discomfort and stigma in accessing sexual healthcare and in discussing their sexual health with
their providers.
At the same time, we know that computer use among adolescents is really ubiquitous. A very
common source of health information, especially sexual health information. We did a search to
look at the accuracy of sexual health information provided on the Internet, big surprise, very
few, about 25% of the resources accessed, had inadequate information. At the same time,
adolescents report greater comfort and support providing health information and is disclosing
their behaviors to a computer even when compared to a trained, sensitive healthcare provider.
It's that level of confidentiality, that level of anonymity that teenagers really like when they are
working with technologies. We wanted to use that to our advantage in terms of reaching
teenagers. There are a few web‐based contraceptive decision support tools available and
available online. When We shared some of these in our initial work with teenagers, they felt
that they were really toward older women and that it was hard for them to find those particular
sites. When the information was presented, it was often presented in a way that was
overwhelming for the younger population.
We developed healthy you salud y tu. It's an interactive, individually tailored, mobile health
application to really support the delivery of patient centered contraceptive care; To raise
reduce unintended pregnancies among Latino adolescents. We designed the app to be used in
conjunction with a clinical encounter, a clinical visit. While it could be used as a stand‐alone
information tool, we wanted teenagers to be connected with care and to have that face to face
time with the provider. So much is left unsaid unless you actually can go into depth and have
those conversations with adolescents and help them access the appropriate support in
contraceptive methods that they may need
In developing this, we really engaged adolescents and providers and community partners to
develop a tool that they value and that fits in with their existing systems. We then pilot tested
it and had an iterative revision process and then applied to Pcori for a large cluster randomized
controlled trial. We had three primary study aims. Aim one was to support adolescents in
making and using decisions about effective contraceptive methods to both prevent unintended
pregnancies as well as protect them from STI's and HIV. Aim two was to improve the
effectiveness and efficiency of the clinical encounter. And three to reduce the incidence of
unprotected sexual intercourse over time.
We use this for numbers control trial of 18 school‐based health centers in Los Angeles unified
school district. It's the 2nd largest school district in the nation. We recruited 1316 sexually
active Latina adolescents between 14 and 18 years of age. While on this slide that is
impressive, when you hear from our community partner really engaging and working with 18
different school‐based health centers was a heavy, heavy lift. I am just so proud of my
community‐based team for making this study possible. The youth were given an iPad at check‐
in. On the iPad, they were given at the control sites, a health questionnaire, and intervention
site the actual app. They were then given a link to complete an online post visit survey within
48 hours of their clinical visit. We followed up these youth over time and reassessed at three
and six months after their set clinical visit. We did not incentivize youth for using the actual app
its self. They received their incentives once they complete the follow‐up questionnaires. They
could receive up to $70 through a graduated incentive structure.
I want to give you a little bit of context with the Healthy You app does. It's in English and
Spanish. The app assessed eligibility and obtains consent for the study. It began with pre‐
knowledge assessment. The youth said that they did not like being asked a lot of pre‐and post‐
questions. They suggested it be developed and framed in terms of a MythBusters type game. It
has a gamification feature. It asked the users about what is important to them. Lifestyles
questions, questions about attitudes, how important it is to have your contraceptive method be
private. Period regularity, weight gain, efficacy, all of those life style considerations that are
important to teens. In addition, it asked about their contraceptive use history, their
preferences, satisfaction with the methods that they have used or tried or ability to get to a
clinic for a refill or to adhere to that particular method of contraception.
Based on all of that input that the youth provided, the app provided individually tailored
recommendations through an algorithm that we developed with contraceptive adolescent
health experts. In this case, I hope you can see this a little bit better on the overhead, in this
case, the youth ‐‐ the top two recommendation was the intrauterine device and the implant.
The longer acting reversible forms of contraceptive methods. But, instead of saying what the
app recommends for you, you go with that. The youth is given an opportunity to learn about
any method they want. Because, maybe there was not something in the algorithm that is
important to them that needs to be considered. They could select on any method that they
wanted and learn additional information. So, this is an example of the slide we had. We had a
slide like this, this is a screenshot. Whoops. What happened to my slides?
There we go. This slide for an IUD. It has some basic information about the IUD and the video
of a provider talking about that method. and a video of a youth talking about the method. The
videos were actually developed through our partnership with youth from the clinics and
providers of the clinics so it was salient to the local populations.
Upon completing the app, the app asked the adolescent what methods they were most
interested in using. There was a printout for the clinician that provided a unique ID for the
youth, any potential contraindications, what method the youth is interested in using, and what
the app recommended. The provider had a heads up to talk about contraception, regardless of
the visit type for the youth. Now, these are all high‐risk youth that were eligible for this study.
The focus of this is really on the engagement process. I wanted to set the framework. Rather
than me talk for my community partners, I am honored to have Rosario Rico here to talk in
more depth about what our partnership looked like and some of the work that she did. I will
turn it over to Rosario at this point.
>> ROSSARIO: Good morning, everyone. Again, my name is Rosario Rico and I work for the LA
Trust for Children's Health.
With this partnership, this is first of its kind for our organization to work with the University to
do this type of research study. So, a little bit about our organization. We are a nonprofit that
was created out of Los Angeles Unified School District. Like Kathleen said, it is the second
largest school district in the United States. Our organization supports the district with their
wellness network initiative. They have established and supported wellness centers across the
district. In the last seven years, they have built 15 wellness centers which are comprehensive,
full‐service committee service clinics inside mostly high school campuses. Through our
partnership, we engaged youth as part of our strategic plan is to develop student advisory
boards a at all 15 wellness centers to help engage students and work closely with the clinic. We
engage with the providers; we have quarterly meetings with all of the clinic providers who are
operating these wellness centers across the district. We engaged staff as well. Through all of
this, we engaged all three youth, providers and clinic staff through development of the app.
For the design, readability and making sure it was culturally relevant. Again, we recruited 15
wellness centers that were already established and that we were working closely with. We also
recruited other school‐based health centers within the district that had been established
already prior to be part of this research study. We engaged the clinic partners to help us
implement and facilitate the implementation. We wanted to make sure that we took their input
into consideration. That was really crucial for us as we knew that the importance of the success
of this project would require a little bit more buy in. We also provided a lot of technical
support to the clinics, the LA trust is LA based and UCSF is in San Francisco, we had in person TA
support from our staff and monthly technical assistance, we eventually graduated to monthly
webinar or phone.
We obviously facilitated ongoing quality of improvements as well. Just to give you a little bit of
background of LA USD, LA USD is huge. They cover 730 mi.² across LA County. The distance
between all of the wellness centers was pretty significant. If anyone has been to LA, there is
always traffic. Traffic can never be an excuse to get anywhere. Just knowing where we had to
travel… If you notice this map here that I have, I know it's difficult to see. The darker shade
areas are areas where they have higher rates of teen births. This is a map from 2012. They are
actually‐‐ where it says inside the boxes are names of high schools, LA USD high schools. If you
notice where these wellness centers were established, they primarily are in the darker shaded
areas. This means higher teen birth rates. This is definitely very intentional, we wanted to
target the higher risk population.
The youth who are represented LA county's city data gives us a proportion of gonorrhea about
30% between ages of 15 to 24 and chlamydia cases are 15 to 24%. This is a population that
needs a lot of services, especially around reproductive health. Again, we wanted to be
intentional about the communities or the neighborhoods that we wanted to target. I already
mentioned about the teen births‐‐ just the general demographics. 74% Latino, 11% Black, 9%
white and 6% other.
Again like I mentioned earlier, we engage youth from the very beginning from the colors of the
app, the design elements of it, the readability, we made sure that it was‐‐ even when they are
translate the app, there are certain words that are technical words that you translate but it's
not culturally relevant or they don't understand that word. So, you have to use that word that
they feel they would understand better. We also engaged these student leaders that work
closely already with the clinical already to do some additional outreach presentations, one of
the presentations that we developed with them is my body but, my health, my future. Talk
about life planning and how they see their future and really engage young girls in this
conversation. That was just one outreach strategy is limited. Other events like doing tabling
events, working closely with the leadership group to promote the wellness center and the
services. That is part of their normal duty anyways, but we definitely provided things to this
partnership. We are grateful that they provided the funding to help us push outreach for this.
So, in terms of clinic engagement, we felt it was really crucial to engage the clinic partners. One
way of doing that was developing a clinic workflow and getting their input. Where within the
clinic‐‐ every clinic operates differently. Where within the clinic was the app going to be given
before, after registration, between vitals? Getting their input was extremely important.
Providers provided content and you saw that they also created the videos, they help us create
the videos. The student would say, hey, you were on the video. It was nice to see that. We also
had quality improvement via phone or in person. We would trade off. We also provided
incentives. We knew that when‐‐ this research study is not something that they are used to
doing. It was the first of kind. For them, it was hard to understand the importance of just
making sure that we are making it consistent. Providing incentives and really building those
relationships helped with the buy‐in. Obviously, you need to have the structured MOUs.
Outlining exactly the expectations and it also helps that it was a little funding to Pcori and UCSF,
we provided additional funding just to say thank you for participating in this research study this
is going to bel helpful for everyone and thank them for their time.
Partnership outcomes was the development of the app, it was great. We had a stronger buy‐in
and support from the partners. It's first randomized controlled study of this kind, of this
magnitude in LA USD with school health‐based centers. Clinics increased their interest and the
research now, there are other things that we are starting to look at. Now that we know that it's
feasible, are there opportunities are the future? I feel like we were pretty successful in
implementing the outcomes. We also just closed a project with the end of the year celebration.
But now we will talk about results.
>> KATHLEEN: Thank you so much, Rosario. You can see her passion and enthusiasm really
come through in the work that we do. I'm just going to give a quick overview of our results.
They are pretty much hot off the press. We found significant increases in pre‐post‐knowledge
after using the app. We found increases in self‐efficacy, both immediately following the app
and at three‐ and six‐months follow‐up. Those gains were greater in the intervention and part
of the control groups. The most significantly compared to controls, app users reported
significantly larger increases in the use of effective contraception. As a matter of fact, at
baseline, only 29% of youth reported using any form of contraceptive methods. That means
71% were not using anything at all. This increased to 63% and was sustained at the three‐ and
six‐month follow‐up period. The hundred and 117% increase in contraceptive use among this
very high‐risk population. We are really excited about sharing and starting to disseminate these
findings.
The providers also reported that the app significantly engaged teens in the contraceptive
decision‐making process. 83% of providers reported that. 75% of providers reported that it
really helped them provide individually tailored contraceptive support for their adolescents.
The adolescents said that they understood and liked the information of the app and 85% said
that they would recommend it to a friend.
In terms of next steps, we want to continue to build on this partnership and expand it. Revise
the app. Feedback from the clinics and from the youth‐‐ it's only for Latina youth, we want to
use it too. We want to be able to give it to other youth. My favorite question is: what about
the boys and the needs and the support that they need? They underutilize wellness centers, so
we actually got pilot funding this past year and we have been using and have been working on
revising the app so that it is relevant for and provides sexual health content that is relevant for
males, LGBTQ youth to make it much more inclusive and welcoming for all youth. We provide a
menu of options so its very much user driven while maintaining contraceptive and decision‐
making support. That way it will be prepared for ease of implementation as we expand to
other school‐based health centers in the county. Statewide and nationally, we are actually in
the process of applying for implementation. Thank you. Are they any clarifying questions at this
point? If not, we can give time for the other presenters. Thank you.
[APPLAUSE]
>> EMCEE: Okay. And our next presenter is Jas, who is presenting on behalf of the smile team
the title of his talk is randomized controlled trial of an individualized decision aid for women
with lupus.
>> JASVINDER: Thank you for this opportunity to share our research with you. I am here
presenting on behalf of our entire team. We are fortunate here to have Candace Crane who is
our research partner. Our patient research partner was going to be with us virtually but she has
laryngitis so we don't have a recording. But she is here in spirit with us she is recovering.
As soon as my slide pops up, we'll get started. Disclosures are as they show on the slide. There
are disclosures.
[LAUGHTER]
>> JASVINDER: There are disclosures
[BACKGROUND CHATTER]
>> EMCEE: We have the other lights. I am smarter than I look.
>> JASVINDER: I hope everyone enjoyed breakfast this morning. It was very nice.
>> EMCEE: It was very nice‐ wasn't it?
>> JASVINDER: There we go. Here are our disclosures as well as my team member's
disclosures. I am going to start with our main messages from this presentation which are that‐‐
and I am going to show you some data that supports this. Lupus patient decision aid for
treatment decision‐making is more effective than the standard paper pamphlet in African‐
American, Hispanic and white women with lupus disease as it led to more reduction and
decision conflict of immunosuppressive which are used to treat lupus disease. They led to
higher informed choice about these drugs, and they were more acceptable to patients and
feasible to use in clinic. I will also share a little bit about‐‐ having done this study, we are now in
the implementation phase and we are aware that there are a variety of barriers to
implementation and dissemination of this decision aid across the country in various clinic of
various types of setup. These barriers are both patient specific but a little bit more context
specific that have to do with busy clinics. Those of the two messages and we will come back to
that as I share some data with you.
Systemic lupus, erythematosus, or commonly called as lupus‐‐ what is it? It's a chronic
autoimmune disease that affects young women in their 20s, 30s, 40s and 50s. The gender‐‐ the
sex incidence differs in females vs males by 8:1 to 10:1 which means its primarily female
predominant disease. It leads to specific morbidity and mortality. Lupus is only .1 of US
population. Yet, leads to 2% of end stage kidney disease in the country which means its impact
on leading to end stage kidney disease is 200 times its competitor like diabetes and other
disease. We also have a lot of evidence that African and Hispanics not only have higher
incidence which is shown in the graph on the bottom. That dark blue bar is African‐Americans.
The purple bar is... and the red bar is whites. The incidence is far higher in African‐Americans
and Hispanics who not only have a higher incidence of the disease, but also have most severe
disease that ends in end stage adrenal disease much more often than the whites and also have
high mortality. Lupus leads to kidney involvement in about more than half the people who
have lupus. Lupus kidney disease, as I said, is causing a disproportionate burden of end stage
adrenal disease, dialysis, and kidney transportation in the US.
What are the challenges? We've had very effective therapies available for almost four decades‐
since the NIH study was done in 1981. However, there is a huge issue with these drugs called
immunosuppressive because of the potential side effects they can cause. There are also issues
with regard to health literacy in the US. It's far more common in African‐Americans and
Hispanics than whites. The numbers are shown right there. Lower health literacy and numeracy
are associated with greater risk aversion when people make choices about drugs. Many people
refuse trying immunosuppressive medications that are both kidney‐ saving and lifesaving
because of the fear side effects and lack of recognition of its benefits.
When we reviewed lupus materials available at the time that we got funded by Pcori, there is a
limitation in terms of what they provide. They are not written at the level that most people can
understand. They have limited suitability population and most of the decision aids don’t
require any evidence in terms of numeracy and the ability to understand numbers.
This is what got us to this point in the beginning of this journey. Here's a patient with lupus.
This is how she feels. I'm 26, I was recently hospitalized with newly diagnosed systematic lupus,
doctors prescribed medication which is immunosuppressive it for me, but he really did not
know anything about it. It is scary to look ahead. This will thing is pretty new to me. I really
need some help to make the correct treatment decisions and here are her questions. This is
the reason why we needed to do what we did.
So, the study that I am going to present to you was to test the effectiveness of individualized,
computerized, patient decision aid for treatment decision‐making in women with lupus kidney
disease in a randomized trial that compared it to a standard paper pamphlet which is the usual
care developed by the American College of Rheumatology in 300 African‐American Hispanic and
white women with lupus kidney disease. We will refer to Lupus Nephritis as lupus kidney
disease from now on.
Who got this intervention? They had to be adults. They had to have lupus kidney disease as
determined by their rheumatologist. They either had to either have a current flareup of the
lupus kidney disease or be at risk and they had to meet the criteria for having lupus. It was
done at four sites across the US: Alabama, California, Ohio and Texas. People got exposed to
this study when they showed up for a regular clinic visit in the waiting room. In the doctor's
visit. There was no research visit as part of the study. They were randomized either get
computerized individualized visual aid or getting the standard paper pamphlet which was the
best information available at that time and 1:1 ratio.
We individualized the lupus decision aid by tailoring it to the target population. Our target
population was African‐American, Hispanic, and white women with lupus kidney disease
showing up in lupus clinics. We incorporated information about barriers and facilitators to
medication decision making by doing work‐ quality to work in African‐American and Hispanic
women primarily but also white women with lupus kidney disease. We performed the state‐of‐
the‐art comparative test analysis to compare the drug's efficacy and harms. We individualized
the content of this decision aid based on a variety of things. What treatment phase with the
patient in? Were they starting treatment or continuing treatment? What current drugs are they
on, this determines what drugs they have as options if the disease is getting worse. We also
included information about each benefit, what it means. We mentioned terms like kidney
failure. One in three patients in our clinic does not understand the word kidney failure. We
have additional information on kidney failure as a back slide. We mentioned things like end
stage kidney disease. Doctors understand that very well but many of our patients don't. We
mentioned a harm, we have an optional slide that tells the patient what to do about that. What
if they have weight gain with corticosteroids, what can they do about it, what can't they do
about it. We offered information behind each of the benefits and harms in their presentation.
We also included patient preferred sections where they told us in the quality of their work,
what they wanted to see as part of the decision aid. Pregnancy, breast‐feeding, fertility. what
these medications do to those. Are these drugs safe? If not, what are the harms? We included
a whole new set of drugs that we are not planning to have as part of this decision called
glucocorticoids‐ commonly called steroids which are most commonly used in the treatment of
lupus when the people are flaring. The work was done primarily in target populations‐ African‐
Americans, Hispanic women with lupus kidney disease but we also included two focus group of
Caucasian women with kidney disease. Here's an example of one of the screens shots from the
decision aid.
This is talking about kidney function. It's presenting two drugs, commonly used drugs, called
Cytoxan and a calcineurin inhibitor. As patient preferred, it tells them which of these drugs is
done for the benefit and there is a number of people who benefit and it gives them a hyperlink
to the blue with kidney function where they can understand what kidney function is. It also
tells them about the differences in the number of women in purple here on the right versus left
where it is actually meaningful or by chance only. As patients told us, they needed to see these
things more than once and in more than one place not only who benefited right below it, but
people who don't benefit. Again, this goes back to the fact that many people in the US have
issues with numeracy and they need to see pictures and numbers side‐by‐side to grasp that
knowledge and actually use it for decision‐making.
This is a screenshot of the ACR lupus pamphlet which is a standard information‐ very beautifully
written. Five‐page pamphlet in English and Spanish which is used in the control group. We
looked at two outcomes primarily. One is decision conflict. How conflicted are you about
deciding to choose an immunosuppressive? This is a scale that available in a low literacy
version with 10 questions. It basically goes from no, unsure, or yes. High score is worse. ranges
from 0‐100. It's also cut off on the scale 25 or above, you still have a meaningful decision
conflict about a decision. The decision we are actually looking at is a decision about an
immunosuppressant for the kidney disease. We also looked at another core primary outcome
which is called informed value for choice. If I can ask a question to the audience, share the
concept with you. How many here people took a train to get to DC?
The rest of you flew to DC. If you knew of the pros and cons of taking a train or flying‐ if you are
taking a plane to DC and your values preferring land‐based commuting and you chose train, it is
an informed choice. If you chose flying, and you prefer land‐based traveling, you don't have
informed choice. If you don't know the pros and cons of flying versus traveling by train, you
don't know informed choice. Informed choice requires knowledge of two choices and the
choice matches your values. If your values are immunosuppressive, you should choose no
immunosuppressive, if your values are for immunosuppressive, you should say yes, I want
immunosuppressive for my lupus kidney disease. That's the concept.
Here are the results of the study. This is a concept flowchart, the two numbers I want to
highlight in this chart is that we start with screening a thousand patients of whom a majority
did not meet eligibility in the sense that they don't have kidney disease or not on a transplant
list or ineligible for the study. 19 patients refused to be in the study. Study refusal rate of 2%.
One patient had psychosis and in the end we had roughly 153 patients who got randomized to
the decision aid and 151... 147 that got randomized to the pamphlet. In each group, two and
one patients withdrew consent before they saw intervention. In the end, we have data on 151
patients in decision aid and 147 of the pamphlets for a total of 298 people. Here is the
characteristics of this patient population. Three columns. The first is everybody, all 298
patients. The next two columns are decision aid and pamphlet and that with a pattern of
results will share with you over the next six slides.
As you can see, 15% of our patient population is white and everybody else is minority as
designed for this study because the barriers are most for minorities, disease is most severe for
the minorities, and they are much less likely to choose immunosuppressive. Our goal was to
recruit a majority minority patients in our study. As you can see, this reflects the education
level of our lupus patient population about 1/3 of whom have high school or less. So, the first
co‐ primary outcome decision conflict score. Remember, the higher score is worse. Standard
reduction in the score is improving or reducing conflict about making a decision about the use
of immunosuppressive. What we see here is if you look at the first and second column, it
shows you the change in the score, reduction of the score. It's 22 points for decision aid versus
about 12 points or 13 points in the pamphlet. It leads to 10‐point difference between the two.
Which is not only statistically significant but also clinically meaningful. If you look at the
bottom, it shows you the proportion of people who still have unresolved, clinically meaningful,
decision conflict. You see half as many people, 22% in the decision aid group versus 44% in the
pamphlet group, again this is both statistically significant and clinically meaningful.
This is a graphic that shows the same data about the decision conflict scores but it shows pre‐
and post. The dotted line goes to the clinically meaningful residual decision conflict. The
hollow rectangles are showing you the scores before in both the decision aid and the pamphlet
group. The solid rectangles are showing you that the reduction is far more in the decision aid
with a solid line at the bottom versus the solid line in the middle with the pamphlet group.
How about our second outcome, remember, this is informed choice. with the knowledge of the
two choices, are you choosing the option that is concordant with your values? Here we find at
the top of the table, 41% of people in the decision aid group made informed choice versus 31%
in the pamphlet group. It is not quite meet the significance level of .05 significantly, but 10%
difference. The bottom is 3 components of the informed choice. e
I want to share with you the three secondary outcomes we looked at. The first one is the
patient preference role in decision‐making called controlled preference scale. At the bottom it
shows you if the patient played the role they wanted to play, if the patient could choose
between active, collaborative or passive, the role they wanted to play or the role they got? So,
as long as the role they wanted to play is the role they got, it's concordance. Concordance is
94% of the decision aid group versus 85% of the pamphlet. This is a P value of .25, this is about
a nine‐point difference, you can make your own judgment whether you will find that clinically
meaningful, it doesn't meet statistical significance here.
We also looked at patient‐physician communication using two tools. A survey instrument
called interpersonal process of care. We also audiotaped conversation in patients in a
subgroup of patients who were actually making decisions that day ‐ it is a smaller subgroup. On
top will see similar scores in our IPC surveys with a P value of .50. The patient‐centered
communication almost reached the P value of .05 being higher in in the decision aid versus
pamphlet group.
Patient acceptability of subjects reading the information is excellent on impact of lupus and
kidney disease, risk factors, medication evidence about medications, and stories about other
people with lupus was significantly higher in the decision aid group versus pamphlet with a
difference between 10% to 20%‐point difference between the two groups. All statistically
significant. Patients found it more feasible to use the decision aid versus pamphlet.
In summary, an individualized decision aid in lupus kidney disease lead to both a clinically
meaningful and statistically significant reduction in decision conflict regarding
immunosuppressive. It also led to clinically meaningful hard informed choice regarding
immunosuppressants, although this showed a nonstatistical trend. This was acceptable to
patient and feasible use. The decision aid is available in Spanish and English and we developed
this based on the eight principles. The limitations for this decision aid are that it is not available
in other languages‐ but we would love to collaborate with people who can help us with that.
We developed this primarily for women so its relevance to men can be developed and isn't
clear although now we have expanded it to include slides for men. The utility and other lupus
manifestations are unknown.
The second to last slide I will share with you, the stakeholder involvement we had in this
process‐ and we had a variety of stakeholders including the research patients, clinicians, patient
research partners, and patient advocacy leaders. As I shared with you, it takes a village to do
this as my other speakers have shared with you. We involved everybody and from the get‐go
we got good feedback from everybody. We also had iterative testing of the target population.
We actually did all of the multiple iterative modifications of this across more than 30 women
who helped us chose a variety of components of this decision aid. We added patient preferred
optional section on steroids called glucocorticoids towards pregnancy and fertility. We paid
special attention to numeracy and people have a lot of difficulty meeting sense out of numbers
especially if you throw at them three benefits and three harms. Our patients taught us that we
don't want to see 10 harms and 10 benefits, we could make tables of that. They said no tables.
Single slide, single harm, tell us about it and use numbers and figures. That's what we did. We
are now in the second phase of implementing this with the help of Pcori and DNI project. We
are focused on a variety of things most of which are focused clinic barriers but also taking into
account a lot of patient issues and patient barriers and working with EMR and technology and is
always part of the equation. How do we make it work? It turns out that we can get patients
involved and clinic staff and involved and sometimes the biggest challenge is technology and
Wi‐Fi.
With that, I will come to the most important slide of this presentation which is that I'm here
representing this huge team of very dedicated people. Candace is here, our patient partner
cannot be here, and none of this would be possible without the contribution and involvement
of each one of these people who made this a success. Thank you. I will take any quick
questions if you have them. Yes.
>> MALE SPEAKER: I was asking if you could go into more detail about how you
operationalized the value concordance with the choice part of this and what you actually did to
measure the values and how they were concordant with the choices.
>> JASVINDER: We use this outcome instrument that's been developed and published about
which is informed choice value concordance. We asked patients some knowledge questions
about immunosuppressive and the disease and they had to get 75% of the answers right. Then,
we asked them what their values are, whether they are for immunosuppressive or against
immunosuppressive. We asked at the end of the decision aid viewing whether they leaning
toward using it or not choosing an immunosuppressive, not choosing immunosuppressive,
being unsure or against an immunosuppressive choice. If your choice... as I used the example of
the train and planes‐‐ you have to know the price, cancellation rate, death rate, inconvenience,
time taken for train and plane, only then you can make an informed choice about trains versus
planes. They had to know things about the immunosuppressive and the disease, the benefits
and harms, and what the disease will do an absence of treatment. They had the adequate
knowledge and with their choice, if their choice matches their value for immunosuppressants
then it's an informed choice. If it doesn’t and if they don't have the knowledge, it's not
informed. It's a complex construct and I think everyone struggles with it in the field as well. It's
a more proximate to the whole process than the decision conflict we believed. That's why we
chose it as a co‐ primary outcome.
>> FEMALE SPEAKER: Hi, can ask a question? I'm a pediatric rheumatologist. So, I actually had
two questions, one was about peds... do you want to do this later?
>> EMCEE: We are just doing clarifying questions for the talk, then we are going to have a
great discussion about the projects at the end. Is this a clarifying question for Jas? Do you want
to wait?
>> FEMALE SPEAKER: I just wanted to know whether you did anything to look at actual
adherence to medications afterwards and health outcomes?
>> JASVINDER: No measure of adherence, which wasn’t part of our study. We tried to get
actual outcomes about kidney function. Believe it or not, the way we collect creatines and
graphics and functions across foresights because absolutely no way to make sense out of that.
In a very short period of six months study, it may even be hard to find. Because, we only have
about 15% of people making an immunosuppressive choice and 85% actually thinking about a
future flare. Very good questions, but not the right set up to see a change. Also, big variation
EMR and our practices across sites that made it impossible for us to analyze any creatines,
adrenal function, dialysis, we did not have enough people among the 20% who were actually
having flare and choose something between variety of drugs. So, not enough sample size.
Thank you.
[APPLAUSE]
>> EMCEE: Let's see if I can do it, third time is a charm, right? Right? Ok. This is what you are
meaning, the web browser? [speaking in a whisper] This is the Internet. I guess third time is not
a charm. [speaking in a whisper] I pressed... He's controlling it. While he is controlling it, he's
more competent than I am. I'm going to blame the fact that I am in Mountain time. I am not a
morning person. It's not because of other reasons like incompetence.
So, I would like‐‐ I am proud to introduce Kim Johnson and Ina Stern who will be presenting
Reducing Disparities in the Quality of Palliative Care for Older African‐Americans through
Improved Advanced Care Planning. Shoot. I'm sorry. I'm letting you do this. Next time, an
afternoon session, please. I don't think I could have messed this up worse if I had purposely
tried. Yay.
>> KIMBERLY: Wait...
>> EMCEE: IS that meant to be that?
>> KIMBERLY: No ...
>> EMCEE: He is going to do it. At least you can see and start if you want.
>> KIMBERLY: Good morning, great to be here. If there are any technical difficulties, I will not
be able to address them so...
[LAUGHTER]
>> KIMBERLY: I will start by saying that we have no disclosures, we are happy to talk about our
study, Equal ACP, and how we have operationalized shared decision‐making as a way to address
racial disparities in care. I will start with talking about the slide that I can see and you can't. It
says what is advanced care planning? By way of background, advanced care planning is making
decisions about future healthcare should you ever become too sick to speak for yourself. This
involves a number of things that we have already heard about today. Sharing beliefs, values and
goals which actually inform preferences for care with both healthcare providers and loved ones,
deciding which treatments which you may or may not want and ultimately for folks who choose
to do so, documenting those preferences in the form of state advanced directive forms like
living wills or health care powers of attorney.
Why would we focus on advanced care planning? It turns out that documenting your
preferences actually improves the quality of care or that certainly discussing them does. What
happens when people participate in advanced care planning? Compared to those who do not,
those who participated advance care planning are more likely to receive the care they want to
the end of their lives. They are more likely to enroll and die with hospice care, which improves
the quality of end‐of‐life care. They spend less time in the hospital in the last months of life
often when they are few options for life‐prolonging care which improve quality. They report
better communication with providers and even after the death of a loved one, caregivers report
less depression, stress, and anxiety due to reduced decision‐making burden in the setting of
serious illness.
What do we know about it African‐Americans and advanced care planning? What we know
about advance care planning in general is while there is lots of good evidence that it improves
quality of end‐of‐life care, few Americans do it. Only about 1/3 of them have done so. African‐
Americans are a group who have done this at even lower rates. These are data from the Kaiser
Family Foundation. Looking at participants who have discussed their wishes for care or named
decision‐maker. These are all older adults. What is immediately obvious is that the blue bar,
which represent African‐Americans, are significantly lower than the green bars. African‐
Americans are much less likely to participate in advanced care planning.
Beyond the fact that we know that this improves the quality of end‐of‐life care, African‐
Americans stand to benefit significantly from this because we know that the overall quality of
end of life for African‐Americans, as in other settings of healthcare, is significantly lower than
that of whites. We also know that many of the areas where they receive lower quality care are
improved by advanced care planning. African‐Americans report lower quality communication
with their providers if they have serious illness. They are more likely to receive care that is not
consistent with their preferences. Less likely to enroll in hospice and their caregivers report
lower overall satisfaction with care. Because advance care planning improves the quality of
care in all of these domains, improving advanced care planning rates among African‐Americans
is an important way to potentially address disparities.
So, even though African‐Americans use advanced care planning or participate in advanced care
planning at lower rates, we know that in fact that like the general populations, African‐
Americans have generally positive attitudes towards advance care planning. These are some
quotes from two of our community stakeholders who helped us to prepare our Pcori
application. There are two points here. The first is really discussing the importance of talking
about preferences. This person states, there should be a point where you talk about what you
do in the future before he needs a breathing tube. The other quote really speaks to the
decision‐making burden that families may undergo when they are unaware of patient’s
preferences. This African‐American caregiver stated: We had talked about it, that made it
easier. The doctor asked me about putting him on the ventilator, I said no. He didn't want that.
What are the barriers to this even though there are generally positive attitudes? There are a
number of them. These are some we learned in our stake holder meetings. There are other
articles, some published by our research group, who documented similar barriers to advanced
care planning among African‐Americans. African‐Americans report more discomfort discussing
end‐of‐life care. My husband would say, it is no fun to talk about death all the time.
[LAUGHTER}
>> KIMBERLY: They have less knowledge about advanced care planning and advanced
directives. They are more likely to have spiritual beliefs which conflict with the goals of hospice
care and advanced care planning related to not giving up or thinking about future healthcare
choices in the setting of serious illness. We also know that there are number of things about
the patient‐provider relationship which may serve as barriers. African‐Americans report lower
quality relationships with providers who are the main facilitators of advanced care planning and
lower levels of trust in both their healthcare provider and the medical community in general.
With that in mind, we undertook the Equal ACP study. The goal of our study is to create
opportunities for older adults to participate in advanced care planning and reap the benefits.
We had a number of key questions, the first is: what is the best way to do this? What is the best
way to help older African‐Americans and whites to discuss and write down their preferences for
care if they choose to do so? What is the best way to close the gap that I showed you on the
slide with the blue and green bars between African‐Americans and whites with respect to
advance care planning? What is the best way to really close the gap between the quality of
care that African‐Americans and whites receive through advance care planning?
Our study is a five‐year study that is being conducted in five states: Alabama, Georgia, Texas,
North Carolina and South Carolina. All the deep South work disparities are quite widespread
and well documented. We are enrolling 800 older adults, half of them half of them African‐
American, all that was serious illness. For example, advanced heart failure, kidney disease or
lung disease. Patients receive advanced care planning intervention which I will talk but on the
next slide. They are followed for one year to see if they either write down their wishes, one
way to participate in advance care planning. Or, discuss their wishes with their provider or
loved ones. We did this because we learned from our stakeholders that not everyone wants to
write down their wishes, but certainly the opportunity to discuss their preferences for care with
those who would be decision‐makers is important. The study is in the second of five years. I
won't show results like the rest of the group.
What are our two comparators? We identified two ways to help our patients participate in
advanced care planning. The first is five wishes, which we describe as a patient driven
approach. Five Wishes is the most widely used advanced care planning document or directive in
the United States. It's written in plain language; we mail this to participants who are
randomized to this arm of the study. It does that, it discusses five wishes. It walks you through
it very plain language, wishes for who you would like to make decisions for you, how you would
like to be treated at the end of life, what are your beliefs about the use of life‐sustaining
therapies, and an advanced care planning facilitator who is a non‐healthcare provider, follows
up and is available by phone with additional questions. The second, and you'll hear more
about this today from Miss Ina Stern, is our respecting choices or reproach. Respecting choices
is a national program. In this structured approach known as respecting choices first steps,
patients and their caregivers or family numbers spend about 60 to 90 minutes with advanced
care planning facilitator where they discuss their beliefs values and goals and talk about
treatment preferences for the future. This is an in‐person visit. I will say in both of these cases,
per the requirements of this particular RFA, that these are existing comparators. These are all
existing interventions that are either for which there is already evidence that they are effective
or were in widespread use prior to the start of the study.
How do we think about shared decision‐making in the context of advanced care planning? We
often think about two big players. Patients and families together and healthcare providers.
Patients provide information about the beliefs values and goals that influence their preferences
and goals if they are seriously ill. Healthcare providers provide information about their
diagnosis, prognosis and the likelihood of the benefits or burdens of certain treatments under
certain conditions. Ultimately, they decide together about treatments which meet patients’
values and goals and patients identify or proxy and they may document the preferences in legal
documents or certainly healthcare providers may write them or document them in the medical
record.
What's wrong with this process in the setting of disparities in advanced care planning and when
thinking about African‐Americans in general? We know that for African‐Americans, the quality
of shared decision‐making throughout the healthcare continuum‐ not just the end‐of‐life‐ is
lower than that of whites. We have a number of things that may contribute to this. We have
healthcare providers; we know healthcare providers are actually less likely to share information
about prognosis with seriously ill African‐Americans. We have patients and families who may
have beliefs, values and goals that are dissimilar to those with they may not illicit or
understand. We already know that there are these additional barriers which are really key to
the quality of shared decision‐making where this intersects. That's related to issues of trust and
poor communication.
We really want to think about we can improve the broken lines. How do we improve shared
decision‐making? We thought about this in a number of ways. Are there opportunities to do
this that do not involve healthcare providers and how could that work in the setting of shared
decision‐making, what would be the additional contribution? We were also interested in
whether or not race matters. The race the interventionist. The reason we were doing this is
that there is quite a bit of literature that suggests that race matters in patient provider
relationships. African‐American patients who have providers who are white report lower
quality interactions with respect to communication. In primary care, those visits are shorter and
patients receive less information than if they are with providers of the same race. In our study,
half of our advance care planning these facilitators are white and half of them are back. This is
just a quote that informed to this part of our study from one of our community numbers.
African‐Americans need information from a trustworthy source, this involves learning from
peers, someone that is like me.
In the course of our study, we have really operationalized shared decision‐making in a different
way. Rather than the nice two circles, we added a third box. We've added an advanced care
facilitator and you will hear from one of those who uses a conversation guide in the first step to
elicit patients and family’s beliefs, values and goals and provide knowledge about advanced
care planning. During the course of this discussion, there are some decisions certainly, beliefs
are shared, additional questions that this facilitator not able to answer for providers and
families in the future. Advanced directives may be completed or other discussions about how to
share preferences. Patients and families then later follow up with their provider to have further
discussions where there is additional information exchanged and certainly some of the things in
the bottom box may be modified. Adding a non‐healthcare provider to help facilitate what may
be broken in advanced care planning, particularly with advance for African‐American patients.
With that, I will allow Miss Ina Stern to share her experiences working with our team. This is
some of our advance care planning working with our team. Miss Stern is actually in the front of
this picture so that is good.
>> INA: You will be happy to know I have no slides.
>> EMCEE: I am very happy to know.
[LAUGHTER]
>> INA: I am going to tell you a little bit about my experience. After decades as an executive, I
thought I knew pretty much everything about establishing relationships and working well with
others. But, after intensive training to become an advanced care planning facilitator, I learned
how much I did not know. I was taught about the importance of advanced care planning and
about the standard legal forms specific to the state of North Carolina. But it was my training in
motivational interviewing, a collaborative conversation style for strengthening a person's own
motivation and commitment to change, that really prepared me for the challenges of meeting
with patients and frankly talking about illness and death with a complete stranger.
Even helping friends talk about end‐of‐life wishes is a daunting task. How do you have a
conversation about that with somebody that you've only just met? Someone who may be from
a different culture, be of a different faith, have family concerns that you can't even fathom. I
was advised that the more I practiced, the more comfortable I would get. For months, before
seeing my first patient, I had advanced care planning conversations with friends and family
using a script that was specially prepared for the respecting choices approach.
I practiced motivational interviewing techniques asking permission, using reflective listening,
expressing empathy and offering acceptance. what I discovered is that these collaborative
techniques turn a prepared script into a real conversation. It was designed to do more than
gain information. It's designed to gain the trust. It was not until I met my first real patient, and
I will call her Martha, that I understood the magnitude of how this study would affect patients
and also would affect us.
I met Martha, an African American woman in her mid‐80s, in a conference room in Durham.
Her niece, whom I assumed would be her healthcare agent, joined us. The conversation lasted
over an hour. It turned out that my assumption about her niece being her healthcare agent
was absolutely wrong. Martha was in fact conflicted about who in her family should be her
healthcare agent. Perhaps this was the reason that though she had been given the paperwork,
for advanced care directive and her healthcare power of attorney, three times, by her
physician, she had never completed them. Martha really wants her son to be her healthcare
agent. He is too ill and, in fact, she is taking care of him. She felt an obligation to have her
grandson‐ who lives several states away‐ take that role. After giving her space, time for
discussion, she realized that her niece who lived right nearby was actually a better choice. At
the end of the session, we filled out her healthcare power of attorney paperwork. We need a
plan to get it notarized and put it into her medical record. It was a first step. I think that she
was primed to take this step because her physician had been diligent and persistent.
The most important thing I learned from Martha, and it's helped me with every other patient, is
that you can be a good listener but not really hear what a person is saying unless you listen
without judgment. It's amazing how trust springs from that fountain. Martha's health issues
are seriously aggravated by her diet. Doctors’ orders, no spicy food, no fatty foods, no sugary
carbonated drinks, but I didn't know any of this. In the middle of our session, she pulls out a
giant bottle of Pepsi. She said, I really shouldn't be drinking this, then she proceeded to tell me
all about the spicy, fatty, sugary foods that she can't stop eating. All I can think is, I gotta fix
this. I gotta fix this. What my going to say to this woman, ready to scold her. But what I really
wanted was the best for her. I could scold her. What I can do is I can affirm the difficulty of
maintaining a healthy diet. I have been there myself. I can accept that she doesn't know what
is best for her health even if she doesn't follow doctor's orders. I can do this simply by listening
and empathizing without judgment in a space of trust.
Martha was very clear about her faith. Her believe in God, her believe in prayer, and her belief
that in her words, sickness is part of living and part of God's will. She was also clear that if
anything happened to her, anything serious, sudden accident or illness, she did not want to be
in her words, a vegetable. Hooked up to machines. This is not how God intended her to live.
She believed that her family knew this. They would not try to sustain her life in this situation.
That brought us full circle ‐back to the reason that we were meeting and why this intervention
is just a part of this year to decision making process.
Through further conversation with her family and with her physician, she can share what we
discussed. Together, they can make decisions that will improve the quality of her life and her
healthcare. It's one step closer to creating an advanced directive that will ensure that her
wishes are respected and honored when the time comes.
I felt all kinds of emotions as we wrapped up our meeting. I was grateful for having such a
willing participant in my first intervention. I was worried, that perhaps I tried to influence her in
ways that I had not intended. I was relieved that I had gotten through it without shaking from
nervousness. Then, Martha surprised me again. She wanted to complete all of the paperwork
including her advanced directive, right then. After seeing more patients, I realized how rare it is
to actually get to the point of filling out any documents. Like I said, her physician planted the
seed by handing her the papers, and by making advanced care planning another aspect of
Providing care for all of her patients.
As an Advanced care planning facilitator, my role is to guide people through the conversation
about their future healthcare needs by helping them think about what they want, what they
believe, what they are afraid of, and who they want to be there for them when they can no
longer speak for themselves. For some people, it's the first time they have ever been asked
these kinds of questions. I tread lightly, I try to keep a sense of humor, I also learned the
importance of asking permission. Even something as simple as inviting a person to call me by
my first name and asking permission to call them by theirs, helps to foster a relationship. I
asked permission to record our sessions and ensure them privacy within the study when I do. I
want them to know that even though I am asking the questions, they are making the choices. I
will conclude by introducing you to two more patients from whom I learned two important
lessons.
From Roberta, also an African‐American woman, I learned not to let my values get in the way.
When she told me that if she was in the hospital, unable to communicate, and the doctors said
she had less than a set 5% chance of recovering the ability to know who she was or where she
was, she would absolutely want to continue all medical treatment. That was not the answer I
expected. Nor was it the answer I would have given if given faced with that. I didn't know what
to say, I was speechless. I pushed right onto the next question in my script until she stopped
me and said, don't you want to know why? Of course, it did. I said, yes please. She shared with
me the profound events surrounding the death of her father. Her choice to continue all medical
treatment at the end of life, made all the sense in the world to me. She taught me how and
when to probe deeper in order to understand and accept the values that I might not share.
My most recent patient ‐‐ Don, a white man of 85, came to see me with his best friend. They
had been best friend for almost 45 years. They wished to be each other's healthcare agents.
They came prepared to fill out their papers. Again, it was because their doctors had told them
that they should do this several times. It had been recommended. They reminded me of
something I knew already but had forgotten. Even though a patient has decided to be a part of
study, even though they have committed to meeting with an ACP facilitator, in this case, a very
nonthreatening gray‐haired senior citizen.
[LAUGHTER]
>> INA: Even though they are ready to fill out all of the forms, talking about the possible end of
their lives, as one of them said to me, is really scary and hard. It's true, I agree, I congratulated
them on doing all of the hard work to get to this point. They hugged me, they thanked to me,
and I thanked them for trusting me as they had trusted each other all these years and I think
that is really what this is really all about.
[APPLAUSE]
>> KIMBERLY: I will just end on that note. I think Ina described beautifully the opportunities
that she has been able to create for patients, opportunities that I think patients of all races,
ethnicities and cultures would love. I think for us in this study, we are hoping to do in groups
who have traditionally not had those opportunities that we improve the quality of end‐of‐life
care. Thanks
>> EMCEE Before you go, does anybody have any clarifying questions for Kimberly? I'm going to
go up there so you can share the mic.
This is an equally fun part where we get to have a great discussion amongst all of us about
these three great talks that we have heard today. Who would like to begin? I will give people
about five seconds or I am going to ask my questions, because I have a lot of them. Someone's
got to have a question‐ there we go.
Somebody is going to come around with a microphone this is been tape‐recorded so for
posterity of me screwing up everything. If you could talk to the microphone so you can be
recorded that would be awesome.
>> FEMALE SPEAKER: Good morning. I'm Kanesha Bryant Moore from University of Arkansas
for medical sciences. My question is actually for the last team that just presented. This is not
my area of work but I do a lot of work within the faith community. I was approached by our
Medical Center staff to develop an approach within the community around advanced care
planning using the five wishes, and working with Faith leaders to actually talk to their
congregants and their people in the community about it. They were saying that they were
getting a lot of confusion, a lot of concerns about end‐of‐life issues in the clinical settings. I was
wondering if you had done any work with the faith community around advanced care planning?
>> KIMBERLY: That's a great question. This particular project does not include faith
communities with the exception of a large community of stakeholders who helped to inform
some of the work that we are doing. I have not done work particularly with faith communities,
although I hope to do that soon. I think that's an awesome place to discuss issues around
advanced care planning and end‐of‐life care. I will say that there are a number of programs
throughout the United States that do this. One in New York by Dr. Gloria White Hammond who
is both a minister and a physician‐‐ not in New York, in Boston. She uses five wishes in her
congregation and has a program specifically targeting discussing end‐of‐life wishes and
completing advanced directives. There are others, there is one in Alameda County and so there
are several model programs across the US to consider when you are developing yours.
>> FEMALE SPEAKER: Buenos Dias. For the person that is working on the lupus project‐‐ my
name is Venus Dunes from Día de La Mujer Latina in Houston Texas, we worked with ACR in
developing a curriculum for Latinas and African Americans to understand about clinical trials in
lupus. I appreciate what you are doing, my question to you is this: we integrated promotoras
and health workers as the messengers in getting this message out to our community that has a
lot of mistrust issues. Did you anticipate this is going to happen and did you integrate them
into your project? Thank you.
>> JASVINDER: The question is‐ that's a great question. The question is whether we
considered incorporating committee health workers as part of disseminating and implementing
this decision aid. In the context of this project, we haven't. We are working on similar chronic
diseases where we are really intrigued by the reach that community health workers have‐
especially for minority populations in terms of being able to communicate and connect the
healthcare teams with people. We'd would be very interested in exploring that as a next phase
of implementation of the decision aid. We have been working with Arthritis Foundation of
America and Lupus Foundation of America who have been our stakeholders for the last five
years. As well as‐‐ we have invited comments from ACR and several capacities on the ACR and
we are in touch with the lead on the lupus initiative within the ACR who is also one of those
sites for us for the implantation. I think that's an excellent suggestion for us to explore when
we go from 15 centers and 3,000 patients to the whole country, and the 70,000 or hundred and
50,000 people suffering from lupus, we are going to need more than just a few clinics and a few
iPads to be able to do this. Several states have committed to help workers that are paid are and
are allowed to be the care system, but several other states do not yet have that mechanism and
that's in the healthcare delivery side that would help and if it changes over time at least people
with the policy side should push that. Because, I think they are community health workers are
a unique link between patients and families and Candace has been working with our other
project of committee health workers and maybe she has a comment?
>> CANDACE: Sure. Just to sum it up, I think it's really important and like you said, that's
something we're going to look into but to go into the other project briefly, it's a community
health worker and nurse intervention for gout patients. If anyone knows about gout, it's
debilitating, but it also affects African‐Americans as well and so that is something that we are
working on.
>> FEMALE SPEAKER: Hi, my name is Georgia Brown. I am a patient partner on a grant. I was
just curious how each of you engaged your patient partners at what level. I know it sounds like
in the decision tool, you used a lot of surveys and feedbacks, but I am curious how you
incorporated your patient partners and what roles they actually played in your projects.
>> EMCEE: Kathleen, do you want to start and we will just go down the line?
>> KATHLEEN: Sure. Can you hear me? Thank you so much that's such a critically important
question. When you're working with teenagers, and I think also as I heard with the advanced
directive planning, you cannot assume to know what their values and their beliefs and what
their interests are. Even though we have young adults as part of engaged as part of a research
team, that you teenage and young adults is already pretty significant.
We had a central youth advisory board that was informing a lot of the research questions and
informing the design features. We also had local youth advisory boards at each of the school‐
based health centers providing pre‐feedback. Not just on the design, they actually informed a
lot of the study implementation procedures. They informed us on the incentive structures to
provide. They told us that reaching out by email was not the best way‐ that they used cell
phones. Text messages. They changed their cell phone numbers often, so you better ask about
a friend. They informed us on how to reach out to teens that were not utilizing the wellness
centers, because he wanted to have a greater reach than just those walking through the door.
As Rosario talked about, they were the ones who said, we don't know a lot about a lot of
women's health issues, can we have table events at school where you're getting information?
We worked with the community. Outreach workers at the clinics, we worked with the youth
advisory teams to schedule the sessions, then we engaged them in the actual content
development and what we didn't show was the post video production party that we had where
we give them little Oscars for those who could roles as directors or actors in the videos. That
engagement piece was so critical and it was woven throughout all aspects of this study. When
you're working with teenagers, you have to be careful about not overwhelming and also
respecting their voice. Really making sure that the activities were specific and their roles were
clear was important as opposed is having an open advisory session. We are actually taking that.
I'm on the program committee for the Society for Health and Adolescent Medicine and we are
using this framework to inform our national work as well and we have established a youth
engagement involvement for that. We are taking lessons learned from Pcori and infusing that
with other work that we do with youth.
>> JASVINDER: With regards to our project, in fact, we wanted to study rheumatoid arthritis.
That's why we developed the guideline for the American College of Rheumatology. Before we
applied to Pcori our patient partner who also had the same disease, told us that it's not the
disease we would work with. Our question and our disease choice came from our patient
research partner in 2012. That was the first engagement. We then continued the process with
monthly committee meetings which had two patients, appeasing readers partners and three
patient advocacy leadership partners. Five of the eight stakeholder committee members were
patients, PRPs or patient advocacy leaders. Third, the PRPs told us to change the content, they
advised us on colors, images, they also told us that the beautiful wonderful outcomes I wanted
from the scientists at three and six months, we were not going to do them...
[LAUGHTER]
I realized having work with patients and doing surveys for about two decades, that considering
the patient population who has issues with memory and attention and other things, that a
follow‐up‐‐ that we would limit our questionnaires to a three‐minute duration. We did not
capture all outcomes and wanted to capture but it made it feasible for patients.
We also had patients, 54 patients, who provided us the content on barriers and facilitators,
what medications they wanted to see in the decision aid, what they wanted to hear about.
Then we had more than 30 patients who actually reviewed the decision it in iterative fashion
and modified it, simplified it for us, told us what to eliminate, and objectionable content they
found. Then, we also, at the end of the study, we wanted to learn from debriefing the patient
as to what their experience was above and beyond all of the other outcomes for the survey that
we had. Candace lead that work, maybe Candace can add a few words about that. They
informed us about the dissemination and implementation at least from the patient context. Let
her out a few words about that.
>> CANDACE: Sure. Basically, we went to our main Lupus clinic and basically debriefed
everyone that had seen the decision aid. What we found was that the patient feedback from
the beginning worked. Everybody said that the link was just right, the colors were just right,
they learned exactly what they wanted to know. That right now is influencing how we are
implementing the decision aid in the clinic, which is also a Pcori funded project. All of that work
beforehand was 100% correct. Everything they wanted, they got.
>> KIMERBLY: I will start by plugging the poster session. We actually have a poster of our
stakeholder engagement here here's my reach search program leader here we have Kanesha
and Nadine is somewhere over there who leads our stakeholder engagement. We did a couple
of things and then, I think there were two main considerations for us.
We used some existing stakeholders in developing our application to inform our comparators
and our study design. After we were funded, we have established a robust stakeholder
engagement strategy. We are in five states and five institutions so we have local stakeholder
advisory councils in all of those occasions. We have a stakeholder advisory board, which
includes both local and national members and stakeholder advisory councils. Meetings are held
quarterly, that information feeds into quarterly stakeholder advisory boards and
communication occurs within the study team. The two main considerations of who sits there,
you mentioned patients and caregivers, absolutely important. Who else is involved in advanced
care planning so all of these groups have representation from healthcare providers, someone
mentioned the importance of spirituality, clergy, community advocates who participate and
work to reduce disparities, and course diversity given our study goals. Half of all of our
stakeholders, at least, are African‐American. Since the funding of our study they presented
identifying studies groups, other patient facing materials, brochures, and ongoing ways to help
us be successful to meet our study goals.
>> I am very sad to say it's 10:30 and because the next thing that Bridget wanted me to
mention is that we have a break and we are going to start the 10:45 plenary session right on
time. I have seen the speakers in their amazing. You don't want to miss that. I want to respect
your time so you all can have a break. I am sure our wonderful presenters were would be
happy to meet with you have you have further questions.
[APPLAUSE]
