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Well, first I'd like to tell you a little bit about myself and
why it's sort of ironic that I'm standing here today.
I grew up in San Jose, California
so IBM and Apple were literally in my backyard.
It was the late '70s, early '80s so we were the first
elementary school to have Apple computers.
However, I decided to be a psychologist and not a
programmer or a technician.
My interest is in working face-to-face with people
through the emotional impact of cancer.
And yet after internship, I found myself talking to
David Gustafson about a new project and a grant he was
putting in for a center of excellence in cancer communication research
through NCI and that's how I joined the CHESS team.
However, I work with these esteemed colleagues;
David Gustafson, who's been the PI on numerous studies in
technology and enhancing health outcomes for over
20 years, he's an industrial engineer; Bret Shaw is a communications
specialist; and James Cleary is a technical guru as a
palliative care and oncologist physician.
However for myself, I use my cell phone just to make calls.
My one-year-old son is more apt at taking pictures with it
than I am. This is my handheld device.
It's very accurate; it's never scheduled me an appointment
on a Sunday.
So for me to talk about technology is ironic because amongst my group
of colleagues, I'm usually the voice of resistance and the
naysayer about why would these patients ever use technology when
they really want personal interactions.
So, that's who I am and ironically why I'm here today.
So I'll talk a little bit about interactive health
communication systems.
We work in the field particularly with cancer,
so if I slip and call these interactive cancer communication
systems instead, it's the same thing.
Our particular model is the CHESS system,
which stands for the Comprehensive Health Enhancement Support System.
There's been evolutions of CHESS when it started out as a DOS based
decision aid for breast cancer, like I said over 20 years ago when
David Gustafson's wife was diagnosed with breast cancer.
It's been used in multiple health contexts from ***, heart disease,
certainly with breast cancer and prostate cancer,
more recently with lung cancer, which is the particular module
that I'll talk about today, but also moving in new directions with
pediatric chemo-oncology and pediatric asthma.
And that's a group where young people are interested in new
technology so we can really push the limits on what kind of
technology we offer them.
So, I'd just like to set the stage for the cancer context.
People when they're diagnosed with cancer,
they're immediately faced with many physical, emotional,
and spiritual challenges that come along with the diagnosis,
the often extended and grueling treatment process often with
survivorship has its own issues, and end of life as well.
So it's a continuum that offers many challenges and therefore many
opportunities to intervene and help people.
Along this there's the need for patients to understand the cancer,
the illness, themselves, the illness itself,
to understand the treatments that they're going to be involved in,
to make sense of the complicated treatment team,
that when you have cancer you don't just have an oncologist,
you often have a radiation therapist, you may have a surgeon,
you may have obviously a pharmacist, lab techs,
research coordinators, second opinions,
so there's a lot of people as part of the healthcare team;
and also learning the healthcare system which now may involve
insurance, referrals, understanding your benefits at
work, family leave, so a lot involved in the coordination of care.
So this really puts people into a totally new world with a totally
different language.
Oftentimes too, the patients find themselves dependent
on family caregivers.
So, the family members are a key player in the role of cancer care.
They help monitor symptoms and side effects,
particularly when the patient themselves doesn't feel up to that
or isn't well enough to make the connection of contacting
the clinical team.
They provide instrumental support and emotional support and they're
often key players in information gathering and help with treatment
decision making.
So amidst all the chaos of the cancer experience,
these people are often faced with really difficult
decision making tasks.
The cancer decision making process often involves multiple options
where there's clearly no right answer.
And as the example I gave earlier about the young women facing the
surgery versus minimally life prolonging chemotherapy,
it's difficult to know what to do in those cases.
Also we've seen a shift in the medical system in terms of moving
away from a paternalistic system to more of a consumerism model.
Again, the patient centered model where oftentimes we're asking
these patients to be involved in and actively participate in a
decision making process when they may personally feel that they're
not qualified to do it.
And I've had numerous patients tell me, "You know,
I haven't gone to medical school, I've never read a thing about
healthcare in my life, how am I supposed to decide this life
and death decision?
That's what the doctors are for."
So there's a natural resistance for some people in that.
On the other hand, some people, you know,
jump at the occasion to become involved.
And so as a clinician it's often difficult to gauge how you're
supposed to act with the variety of people that you come
in contact with.
Needless to say, while patients and family are needing to be fully
engaged and we're asking them to take more responsibility for their
quality of life during the cancer process,
decision making during this tumultuous time is often quite
complex and for many it can be very daunting.
Before I talk about the role that interactive health communication
systems can play in helping with decision support,
I just want to talk a little about the decision process as we
conceptualized it at CHESS.
First and foremost is just the knowledge that options exist and a
decision has to be made.
So just knowing what the options are,
precipitates making the decision.
That follows by a deliberation or an evaluation of those options in
the context of one's own personal values or potential consequences.
And through that process, hopefully people are able to
identify their preferred option and make the decision.
Oftentimes decision making models though might stop here.
The decision's made so we've concluded that process.
However for us, we feel that if a decision is not acted upon then
the decision itself is not very meaningful.
It's that behavior of being able to implement the decision and to,
as we talked about earlier, having an action plan to really empower
somebody to move in the direction that they preferred that makes a
decision an actual action.
And it's those behaviors that then can be evaluated for satisfaction
with the decision.
And either people find themselves satisfied and move on,
or they find that there's some dissatisfaction that may move them
back to the beginning of the decision process again.
Or they may weigh different options and make
different decisions.
So in that sense it can be a very cyclical process.
It's also important to understand though that this decision process
does take place within the physical, the emotional,
and the social context not just of their cancer care,
but of their lives as a whole and so often people with cancer have
many other stressors going on and many other factors that may
influence their decisions.
So in terms of patient centered decision making,
it calls for the patient and even their family caregivers to be very
collaborative in the process and be very informed in
the decision making.
We know that ongoing communication is critical both from the
clinician standpoint, that they need information about the
patient's status that helps them adjust the treatment
plan accordingly.
But also the patient's and the caregiver's need,
in order to be fully engaged, they need the right information at the
right time, but also need the support that enables them to
effectively use the information towards a positive outcome.
Therefore facilitating this information and communication
exchange is a very critical part of patient centered care.
So, interactive health communication systems offer a
potential model for facilitating this provision of the right
information at the right time as well as the support to
help people to do so.
They deliver services for a variety of stages in illness.
So these systems can be used as part of preventative medicine and
promoting health. They can be used in terms of acute disease,
such as recovery from heart disease or heart attack.
They may be used in more chronic kinds of illness as we saw earlier
with diabetes.
For us at CHESS they've been primarily used with cancer.
And I just want to point out there's kind of a unique nuance of
looking at a disease such as cancer that tends to put pressure
on somebody to do something.
So people are naturally sort of motivated when something as
shocking as that happens to them, to take action
and to do something.
And there are different challenges and I'd argue maybe even more
difficult challenges in dealing with chronic health issues such as
diabetes where there's a constant need to generate the pressure to
keep doing things over an extended period of time.
So these systems also work in terms of what we see as providing
three basic channels of communication.
The first category is didactic information,
so simply communicating information to people.
The second channel would be in terms of supportive communication,
so actually a two-way communication,
really connecting people for support.
And then the third is more interactively through coaching or
skill building kinds of activities,
and this can occur at either a single event or across
a continuum of care.
There's also variety in terms of the technology that
can be provided.
So we've seen health systems that use things as simple as the
telephone or interactive kiosks that take in information and
provide a tailored printout; more complex things,
such as CHESS which is based on the Internet; and even more so,
directions towards using hand-held devices.
And along with the variety of technologies,
there's also a variety of aims that these devices may have.
So they may be geared towards helping people understand their
circumstances, helping them with coping,
helping form the partnership with a healthcare team or a community
of support with peers or their own family members,
and certainly as we've talked about today, with decision making.
There are certain advantages to such systems.
We've talked about today that they can be widespread and more
disseminated at a lower cost than face-to-face individual
kinds of interventions.
They can be more timely and tailored towards the specific
needs of the individual and also available on demand.
So this is occurring when the user feels it's most relevant or that
they're ready for the information, also at the location, the timing,
the speed, the depth, or the level of privacy that they wish.
So for example, we find that most of our website,
a lot of the use is done between 10:00 p.m.
and 2:00 a.m., which is a time where your other healthcare
providers are not available, usually, to take calls.
But that's a time where either you're awake with anxiety and
wanting questions answered and can really find a resource of support,
or also a time when all the other activities of your day slow down
and you finally find yourself the time to sit down at computer and
work through some of the decisions.
Certainly they also offer an avenue where a single virtual room
where people from multiple disciplines can get together and
offer shared resource.
So you may see things on the website that come from a physician
perspective, a psychosocial perspective,
a communications perspective.
So it's a way to gather a lot of different perspectives together
for somebody in one room, which often doesn't happen in our often
compartmentalized healthcare system.
So I want to shift to talk a little bit more specifically then
about CHESS and our lung cancer module.
CHESS is a noncommercial Internet based system,
so it's done with a PC over the internet.
We find it's a user driven source and it's a single integrated
suite of resources.
So we call it a comprehensive system because we have taken
different services that take advantage of the different
channels of information to include information-- channels of
communication that include information,
supportive communication, as well as coaching services.
And that our aims with developing CHESS is to promote better coping
for patients and their caregivers as well as helping them in the
complex decision making process.
The lung cancer module specifically has taken CHESS in
new directions that it hasn't been before.
This was a 5 year study that just finished about a year ago.
It's the first time we worked with lung cancer which also was the
first time that we worked with advanced stage illness.
In working with advanced stage disease we thought it particularly
important to include caregiver involvement.
We also used a clinician reporting system that helped people track
their symptoms and report it directly to the clinical team.
So here's a brief model of how the communication works.
There's two way communication with peers so other patients and
caregivers on the system, an expert that can answer specific
questions, their own social network, their friends and family,
and then that clinician report providing one way direction
communication to the clinical team.
Here's a list from our homepage, you can see the variety of
services that are available.
And most often the services used is the Discussion Group connecting
them with their peers, and Cancer Topics,
which is frequently asked questions.
We also have treatment decision aids and a respite
aid for the caregivers.
In terms of our decision making, it works by two channels that
include direct decision making through the decision aid,
but also just indirectly by empowering people with
the variety of resources.
They feel they can better understand their situation,
understand potential outcomes and participate in their healthcare.
What's unique about CHESS is that it provides a continuous source of
support beyond the decision.
So it really does target implementation and reevaluation,
but also that it expands the support across the continuum of
the disease trajectory from diagnosis through survivorship
or end of life.
We have seen benefits to our caregivers,
so I'll talk briefly about our findings so that you'll know why
our method of development, or implementation might be helpful.
We've had success with quality of life for patients and now we're
seeing that brought into reducing caregiver burden
and negative affect.
I don't have time to go through those quotes so
I'll briefly go through this.
We've also seen secondary analysis of unexpected patient benefits
where there seems to be some survival benefit.
Patients may be living longer with the CHESS resource than
the internet control.
We also find that in sending the report to the clinicians,
those who are in the arm that send the report have had greater
symptom reduction at subsequent check in than those in a CHESS
only arm that didn't have the report.
So providing that information to the clinicians is also helping in
terms of symptom management.
So in terms of our development model,
what's important to understand about the CHESS modules is that
they, each separate module starts from a ground up prospective.
So rather than just applying the breast cancer module to lung
cancer patients, we did a separate needs assessment starting with
critical incident interviewing to get a real in depth perspective of
the variety needs and then using survey instruments to answer
specific questions that we've gathered from
that needs assessment.
It's important then, as the needs assessment serves as the
foundation of our system, that the sample is both representative of
our target audience in terms of demographics as well as disease
aspects of timing and stage, but also important to include people
that have a variety of experience with the technology
that you're proposing.
So you want people who have never used the technology and you also
want people who are quite adept at the technology in terms of testing
whether or not it will be useful across that variance.
Then we go from the needs assessment to deciding what our
system's going to have.
We use paper prototypes first because they can rapid cycle
through iterations.
From the paper prototype, then we have a good sense of the nature of
the content, its scope, its appropriateness and the flow
of the system.
After feedback from that we actually program it live and
then we test it again.
And this time we test it with a target audience, clinicians,
and the development team and we're looking for comprehensiveness,
clarity, appropriateness, and usability across all of our
audiences and features.
Early on in the development it's also important to consider
implementation factors and the first of which is what
technology to use.
It's important to match the intervention to the needs,
so we don't simply want to use technology for technology sake.
My colleagues love the smartphone, they say,
"Let's do something with the smartphone."
I'm like, "My older patients can't read the smartphone."
So really finding out who's your niche group,
what is the technology that's going to make a difference for
them and be adapted by them.
Technology can also be a barrier, so people who lack experience may
be reluctant to adapt the system, whereas people who have a lot of
experience may be already using it and so they don't feel a need for
your extra resource and they may decline before they even recognize
the value that it may have had for them.
Other implementation issues include timing,
so when do you give somebody the intervention?
For some, if it comes too early, it may feel
overwhelming or foreboding.
For others, it may come too late if you wait too long.
At the point of diagnosis they may need to make decisions and if they
don't get your support system until weeks later,
they may feel that you missed the opportunity to offer
them the greatest help.
So we found that it's important that we have a system that
addresses the entire spectrum of the illness so that somebody can
jump in at any point and find that it's particularly relevant or
helpful to them at that time.
Also in terms of the system, once we've developed it a big question
is, "How are we going to get it to our target audience?
How do we get CHESS from our workshop into the patient's hands?"
And we found that through our research,
our implementation requires a key reliance on the clinical team.
And I imagine that would hold true for dissemination in a
non-research context where the central role of the physician is
often connecting the patient to the whole of the healthcare system
and that anything that the physician feels makes their work
more efficient and fits within their already existing clinical
framework, they're more likely to promote and the patient is more
likely to respond to their recommendation.
One last piece about implementation before I finish is
that we've also found that training is an important
role in our studies.
In our studies, people have the option to either opt into a
training or opt out.
The training is done over the phone but it walks them through
the system, what are the various services available and
how might you use them.
And we've found that those who receive the training use the
system more and use more aspects of the system than those
who don't get trained.
Separate research has indicated that greater use and different
kinds of use lead to favorable outcomes.
So that helps us make the assumption that those that get
training are more likely to achieve the benefits that we
desire from using these symptoms.
So training is important in terms of probably providing them not
only exposure to what is the system and why might you want to
log onto it, but also competence and feeling like they can
use the system effectively.
But we also suspect it may have something to do with providing a
relational connection, that they feel then connected to the team
and they may trust the resource more than something that's just
offered outside of that context.
So in conclusion, through our work with CHESS we see it as a good
model for such health communications systems in that is
has the promise that a single source can offer a lot of
different channels of communication and support.
But that quality systems need to use both a comprehensive approach
to the content that they include, but also to the developmental
process and really making a foundation of these systems and
the needs that exist for the target audience.
And also the thoughtful application of implementation
that's targeted towards their audience,
it's going to most help patients and caregivers be active and
engaged in turning their information into action for
positive health outcomes.