well, first i'd like to tell youa little bit about myself and why it's sort of ironic thati'm standing here today. i grew up in san jose, california so ibm and apple were literallyin my backyard. it was the late '70s, early'80s so we were the first elementary school to haveapple computers.
through the emotionalimpact of cancer. and yet after internship,i found myself talking to david gustafson about a newproject and a grant he was putting in for a center ofexcellence in cancercommunication research through nci and that's howi joined the chess team. however, i work withthese esteemed colleagues; david gustafson, who's beenthe pi on numerous studies in technology and enhancing healthoutcomes for over 20 years, he's an industrial engineer;bret shaw is a communications
specialist; and james clearyis a technical guru as a palliative care andoncologist physician. however for myself, i use mycell phone just to make calls. my one-year-old son is more aptat taking pictures with it than i am.this is my handheld device. it's very accurate; it's neverscheduled me an appointment on a sunday. so for me to talk about technologyis ironic because amongst my group of colleagues, i'm usually thevoice of resistance and the
naysayer about why would thesepatients ever use technology when they really wantpersonal interactions. so, that's who i am andironically why i'm here today. so i'll talk a little bit aboutinteractive health communication systems. we work in the fieldparticularly with cancer, so if i slip and call theseinteractive cancer communication systems instead,it's the same thing. our particular modelis the chess system,
which stands for the comprehensivehealth enhancement support system. there's been evolutions of chesswhen it started out as a dos based decision aid for breast cancer,like i said over 20 years ago when david gustafson's wife wasdiagnosed with breast cancer. it's been used in multiple healthcontexts from hiv, heart disease, certainly with breastcancer and prostate cancer, more recently with lung cancer,which is the particular module that i'll talk about today, butalso moving in new directions with pediatric chemo-oncologyand pediatric asthma.
and that's a group where youngpeople are interested in new technology so we can reallypush the limits on what kind of technology we offer them. so, i'd just like to set thestage for the cancer context. people when they'rediagnosed with cancer, they're immediately facedwith many physical, emotional, and spiritual challenges thatcome along with the diagnosis, the often extended and gruelingtreatment process often with survivorship has its ownissues, and end of life as well.
so it's a continuum that offersmany challenges and therefore many opportunities tointervene and help people. along this there's the need forpatients to understand the cancer, the illness, themselves,the illness itself, to understand the treatments thatthey're going to be involved in, to make sense of thecomplicated treatment team, that when you have cancer youdon't just have an oncologist, you often have a radiationtherapist, you may have a surgeon, you may have obviouslya pharmacist, lab techs,
research coordinators,second opinions, so there's a lot of people aspart of the healthcare team; and also learning the healthcaresystem which now may involve insurance, referrals,understanding your benefits at work, family leave, so a lotinvolved in the coordination of care. so this really puts people into atotally new world with a totally different language. oftentimes too, the patientsfind themselves dependent on family caregivers.
so, the family members are a keyplayer in the role of cancer care. they help monitorsymptoms and side effects, particularly when the patientthemselves doesn't feel up to that or isn't well enough to makethe connection of contacting the clinical team. they provide instrumental supportand emotional support and they're often key players in informationgathering and help with treatment decision making. so amidst all the chaosof the cancer experience,
these people are oftenfaced with really difficult decision making tasks. the cancer decision making processoften involves multiple options where there's clearlyno right answer. and as the example i gave earlierabout the young women facing the surgery versus minimallylife prolonging chemotherapy, it's difficult to knowwhat to do in those cases. also we've seen a shift in themedical system in terms of moving away from a paternalistic systemto more of a consumerism model.
again, the patient centered modelwhere oftentimes we're asking these patients to be involvedin and actively participate in a decision making process when theymay personally feel that they're not qualified to do it. and i've had numerouspatients tell me, "you know, i haven't gone to medical school,i've never read a thing about healthcare in my life, how am isupposed to decide this life and death decision? that's what the doctors are for."
so there's a natural resistancefor some people in that. on the other hand,some people, you know, jump at the occasionto become involved. and so as a clinician it's oftendifficult to gauge how you're supposed to act with the varietyof people that you come in contact with. needless to say, while patientsand family are needing to be fully engaged and we're asking them totake more responsibility for their quality of life duringthe cancer process,
decision making during thistumultuous time is often quite complex and for many itcan be very daunting. before i talk about the role thatinteractive health communication systems can play in helpingwith decision support, i just want to talk a littleabout the decision process as we conceptualized it at chess. first and foremost is just theknowledge that options exist and a decision has to be made. so just knowing whatthe options are,
precipitates making the decision. that follows by a deliberation oran evaluation of those options in the context of one's own personalvalues or potential consequences. and through that process,hopefully people are able to identify their preferredoption and make the decision. oftentimes decision makingmodels though might stop here. the decision's made so we'veconcluded that process. however for us, we feel that ifa decision is not acted upon then the decision itself isnot very meaningful.
it's that behavior of being ableto implement the decision and to, as we talked about earlier, havingan action plan to really empower somebody to move in the directionthat they preferred that makes a decision an actual action. and it's those behaviors that thencan be evaluated for satisfaction with the decision. and either people findthemselves satisfied and move on, or they find that there's somedissatisfaction that may move them back to the beginning ofthe decision process again.
or they may weigh differentoptions and make different decisions. so in that sense it can bea very cyclical process. it's also important to understandthough that this decision process does take place within thephysical, the emotional, and the social context notjust of their cancer care, but of their lives as a whole andso often people with cancer have many other stressors going onand many other factors that may influence their decisions.
so in terms of patientcentered decision making, it calls for the patient and eventheir family caregivers to be very collaborative in the process andbe very informed in the decision making. we know that ongoing communicationis critical both from the clinician standpoint, thatthey need information about the patient's status that helpsthem adjust the treatment plan accordingly. but also the patient'sand the caregiver's need,
in order to be fully engaged, theyneed the right information at the right time, but also need thesupport that enables them to effectively use the informationtowards a positive outcome. therefore facilitating thisinformation and communication exchange is a very criticalpart of patient centered care. so, interactive healthcommunication systems offer a potential model for facilitatingthis provision of the right information at the right time aswell as the support to help people to do so.
they deliver services for avariety of stages in illness. so these systems can be used aspart of preventative medicine and promoting health. they can beused in terms of acute disease, such as recovery from heartdisease or heart attack. they may be used in more chronickinds of illness as we saw earlier with diabetes. for us at chess they've beenprimarily used with cancer. and i just want to point outthere's kind of a unique nuance of looking at a disease such ascancer that tends to put pressure
on somebody to do something. so people are naturally sortof motivated when something as shocking as that happens tothem, to take action and to do something. and there are different challengesand i'd argue maybe even more difficult challenges in dealingwith chronic health issues such as diabetes where there's a constantneed to generate the pressure to keep doing things over anextended period of time. so these systems also work interms of what we see as providing
three basic channelsof communication. the first category isdidactic information, so simply communicatinginformation to people. the second channel would be interms of supportive communication, so actually a two-waycommunication, really connectingpeople for support. and then the third is moreinteractively through coaching or skill buildingkinds of activities, and this can occur at either asingle event or across
a continuum of care. there's also variety in termsof the technology that can be provided. so we've seen health systemsthat use things as simple as the telephone or interactive kiosksthat take in information and provide a tailored printout;more complex things, such as chess which is based onthe internet; and even more so, directions towardsusing hand-held devices. and along with thevariety of technologies,
there's also a variety of aimsthat these devices may have. so they may be geared towardshelping people understand their circumstances, helpingthem with coping, helping form the partnership witha healthcare team or a community of support with peers ortheir own family members, and certainly as we've talkedabout today, with decision making. there are certainadvantages to such systems. we've talked about today thatthey can be widespread and more disseminated at a lower cost thanface-to-face individual
kinds of interventions. they can be more timely andtailored towards the specific needs of the individual andalso available on demand. so this is occurring when the userfeels it's most relevant or that they're ready for the information,also at the location, the timing, the speed, the depth, or thelevel of privacy that they wish. so for example, we findthat most of our website, a lot of the use isdone between 10:00 p.m. and 2:00 a.m., which is a timewhere your other healthcare
providers are not available,usually, to take calls. but that's a time where eitheryou're awake with anxiety and wanting questions answered and canreally find a resource of support, or also a time when all the otheractivities of your day slow down and you finally find yourself thetime to sit down at computer and work through someof the decisions. certainly they also offer anavenue where a single virtual room where people from multipledisciplines can get together and offer shared resource.
so you may see things on thewebsite that come from a physician perspective, apsychosocial perspective, a communications perspective. so it's a way to gather a lot ofdifferent perspectives together for somebody in one room, whichoften doesn't happen in our often compartmentalizedhealthcare system. so i want to shift to talk alittle bit more specifically then about chess and ourlung cancer module. chess is a noncommercialinternet based system,
so it's done with apc over the internet. we find it's a user driven sourceand it's a single integrated suite of resources. so we call it a comprehensivesystem because we have taken different services that takeadvantage of the different channels of information toinclude information-- channels of communication thatinclude information, supportive communication, aswell as coaching services. and that our aims with developingchess is to promote better coping
for patients and their caregiversas well as helping them in the complex decision making process. the lung cancer modulespecifically has taken chess in new directions thatit hasn't been before. this was a 5 year study thatjust finished about a year ago. it's the first time we worked withlung cancer which also was the first time that we workedwith advanced stage illness. in working with advanced stagedisease we thought it particularly important to includecaregiver involvement.
we also used a clinician reportingsystem that helped people track their symptoms and report itdirectly to the clinical team. so here's a brief model ofhow the communication works. there's two way communicationwith peers so other patients and caregivers on the system, anexpert that can answer specific questions, their own socialnetwork, their friends and family, and then that clinician reportproviding one way direction communication tothe clinical team. here's a list from our homepage,you can see the variety of
services that are available. and most often the services usedis the discussion group connecting them with their peers,and cancer topics, which is frequentlyasked questions. we also have treatmentdecision aids and a respite aid for the caregivers. in terms of our decision making,it works by two channels that include direct decision makingthrough the decision aid, but also just indirectly byempowering people with
the variety of resources. they feel they can betterunderstand their situation, understand potential outcomes andparticipate in their healthcare. what's unique about chess is thatit provides a continuous source of support beyond the decision. so it really does targetimplementation and reevaluation, but also that it expands thesupport across the continuum of the disease trajectory fromdiagnosis through survivorship or end of life.
we have seen benefitsto our caregivers, so i'll talk briefly about ourfindings so that you'll know why our method of development, orimplementation might be helpful. we've had success with quality oflife for patients and now we're seeing that brought intoreducing caregiver burden and negative affect. i don't have time to gothrough those quotes so i'll briefly go through this. we've also seen secondary analysisof unexpected patient benefits
where there seems to besome survival benefit. patients may be living longerwith the chess resource than the internet control. we also find that in sendingthe report to the clinicians, those who are in the arm thatsend the report have had greater symptom reduction at subsequentcheck in than those in a chess only arm that didn'thave the report. so providing that information tothe clinicians is also helping in terms of symptom management.
so in terms of ourdevelopment model, what's important to understandabout the chess modules is that they, each separate module startsfrom a ground up prospective. so rather than just applyingthe breast cancer module to lung cancer patients, we did a separateneeds assessment starting with critical incident interviewing toget a real in depth perspective of the variety needs and then usingsurvey instruments to answer specific questions thatwe've gathered from that needs assessment.
it's important then, as theneeds assessment serves as the foundation of our system, that thesample is both representative of our target audience in terms ofdemographics as well as disease aspects of timing and stage, butalso important to include people that have a variety ofexperience with the technology that you're proposing. so you want people who have neverused the technology and you also want people who are quite adept atthe technology in terms of testing whether or not it will beuseful across that variance.
then we go from the needsassessment to deciding what our system's going to have. we use paper prototypes firstbecause they can rapid cycle through iterations. from the paper prototype, then wehave a good sense of the nature of the content, its scope, itsappropriateness and the flow of the system. after feedback from that weactually program it live and then we test it again.
and this time we test it witha target audience, clinicians, and the development team and we'relooking for comprehensiveness, clarity, appropriateness, andusability across all of our audiences and features. early on in the developmentit's also important to consider implementation factors and thefirst of which is what technology to use. it's important to match theintervention to the needs, so we don't simply want to usetechnology for technology sake.
my colleagues love thesmartphone, they say, "let's do somethingwith the smartphone." i'm like, "my older patientscan't read the smartphone." so really finding outwho's your niche group, what is the technology that'sgoing 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 itand so they don't feel a need for
your extra resource and they maydecline before they even recognize the value that it mayhave had for them. other implementationissues include timing, so when do you givesomebody the intervention? for some, if it comestoo early, it may feel overwhelming or foreboding. for others, it may come toolate if you wait too long. at the point of diagnosis they mayneed to make decisions and if they don't get your supportsystem until weeks later,
they may feel that you missedthe opportunity to offer them the greatest help. so we found that it's importantthat we have a system that addresses the entire spectrum ofthe illness so that somebody can jump in at any point and findthat it's particularly relevant or helpful to them at that time. also in terms of the system, oncewe've developed it a big question is, "how are we going to getit to our target audience? how do we get chess from ourworkshop into the patient's hands?"
and we found thatthrough our research, our implementation requires a keyreliance on the clinical team. and i imagine that would holdtrue for dissemination in a non-research context where thecentral role of the physician is often connecting the patient tothe whole of the healthcare system and that anything that thephysician feels makes their work more efficient and fits withintheir already existing clinical framework, they're more likely topromote and the patient is more likely to respond totheir recommendation.
one last piece aboutimplementation before i finish is that we've also found thattraining is an important role in our studies. in our studies, people havethe option to either opt into a training or opt out. the training is done over thephone but it walks them through the system, what are thevarious services available and how might you use them. and we've found that those whoreceive the training use the
system more and use moreaspects of the system than those who don't get trained. separate research has indicatedthat greater use and different kinds of use lead tofavorable outcomes. so that helps us make theassumption that those that get training are more likely toachieve the benefits that we desire from using these symptoms. so training is important in termsof probably providing them not only exposure to what is thesystem and why might you want to
log onto it, but also competenceand feeling like they can use the system effectively. but we also suspect it may havesomething to do with providing a relational connection, that theyfeel then connected to the team and they may trust the resourcemore than something that's just offered outside of that context. so in conclusion, through our workwith chess we see it as a good model for such healthcommunications systems in that is has the promise that a singlesource can offer a lot of
different channels ofcommunication and support. but that quality systems need touse both a comprehensive approach to the content that they include,but also to the developmental process and really making afoundation of these systems and the needs that existfor the target audience. and also the thoughtfulapplication of implementation that's targetedtowards their audience, it's going to most help patientsand caregivers be active and engaged in turning theirinformation into action for
positive health outcomes.
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