Care Plans For Nursing

i titled my talk, “personalized care plans:harnessing technology and patient-reported outcomes to drive quality care across thecancer continuum”, because that is what really we are striving to do. so today i willprovide you’re a brief overview of challenges to providing coordinated, patient-centeredcare across the continuum, i will tell you a little bit more about what we believed atthe end to be innovative technology and content solution designed to address these challengeswhich we called the on q care planning system, and also as p[previously described, determinethe feasibility, usability and satisfaction data on the breast and gyn dying cancer populationat two cancer centers in the u.s. and you will see that the pilot data that i am presentingare not just confined to what the post-treatment

survivorship care-setting, but we at on qhealth really envision that cancer survivorship is very consistent with the entity of definitionas being any individual diagnosed with and/or his/her family from that time point of diagnosis,and across the care continuum, we certainly do recognize the institute of medicine definition,survivorship care is really predominantly spoken on the care of individuals post a qperiod of treatment and we provide survivorship care plan to help drive care-coordinationand quality care management in that phase of the cancer care trajectory.we really envision that we start where this big grey arrow starts with what our platformis intended to address and what the research we do with academic partners using our platformcapabilities is designed to address. from

care planning and integration of palliativecare and evidence-based symptom management and survivorship care across the care continuumfrom diagnosis through treatment, into that post-treatment survivorship care and inclusiveof end-of-life care in the context of cancer where that is relevant for individuals. sohopefully that provides a good overview. what i am pretty sure i can call out fromthis cancer care is that they are fragmented and the quality of care is inconsistent. thereare many care providers that care for any given individual cancer patient and his orher family; the coordination and communication between these providers is not as frequentat any given point of the cancer-care trajectory. the quality that is provided is also inconsistent.one of the things that really drove me to

leave a 20-year career in academic nursingand doing primary research and symptomatic management was my frustration with the factthat so much evidence is out there today that does not get leveraged into actual clinicalcare practice. so we see that in many care and patient experiences across the care continuum,we see that a good proportion of patients who report significant distress in some timepoint across the care continuum and that that’s been associated with poor clinical outcomesand increased costs. we certainly know that physical symptoms are prevalent across thecare-continuum and that cancer populations from diagnosed through treatment even intoand well-into post-treatment survivorship continuum and certainly during end-of-lifeperiod of care. and yet study after study

has shown that we are not really screeningfor, assessing and managing and keeping with the evidence. there are many more citationsthat i could have put on this slide here. these factors lead to statistics such as thoseseen here from debb mayor, a nurse-scientist at the university of north carolina, who dida population based study in north carolina where she documented that 56% of cancer patientsvisit the ed each year, and most of these result in hospitalizations and a fifth ofthese lead to re-admissions within 30 days and this data is combined with some otherdata. symptoms are a top reason for these health care utilization events. and thesedata are for folks that are on active treatment but we do know cancer survivors in their post-treatmentalso represent a portion of this data. the

most common symptoms that these health careutilization events are gastrointestinal symptoms, dyspnea, fatigue and pain.now if you look at palliative care, palliative care depending on how you define it, wellindependent of how you define it, is not systematically integrated. so if you define palliative careas supportive care then that should be integrated across the cancer care continuum, we do notdo a good enough job of that. but if you are framing this in terms of bringing in a palliativecare team for patients in their end-of-life care, at best from studies have shown thata fifth of the patients gets that offered formally. so what happens in the u.s. at leastis that, we get 600,000 patients who are dying of cancer each year and a huge chunk of thesepatients are being admitted to hospitals in

their last month of life. and i am sorry idid not prepare to look at those stats here in canada. if you look at post-treatment cancersurvivorship care then, this audience here, and i am preaching to the choir knowing thatthe challenges are unique, cancer care is fragmented and poorly coordinated. it’snot a cancer care team anymore and not that it should be just that cancer care team duringdiagnosis and treatment but the cancer care team certainly drops more to the backgroundsetting and there is not clear communication between those that are managing the factorsof care. and all those who care for the post-treatment survivors have gaps in knowledge about post-treatmentconcerns. cancer survivors themselves are seen lessoften by their cancer care teams, are at a

risk for many late effects if treatment andhave many unmet needs in various studies. so they have unmet psychological and socialconcerns, persistent symptoms and problems with functional recovery.all of this is what lead to the development and incorporation of on q health and my decisionto take a role and leading this company. we developed what we believed to be the firsttechnology in platform that aggregate and disseminate the knowledge of clinical intelligence,to be used by a variety of cancer care stakeholders- specifically for the purpose of improvingcancer supportive care delivery, patient outcomes, quality of life and to reduce costs. thereare certainly a lot of electronic patient-reported outcome systems available and there are alot of treatment pathways and care planning

systems, but we believe the first supportivecare planning system that integrates electronic patient-reported outcomes with clinical evidenceto drive integrated supportive care planning and palliative care.just a little bit more data on the impetus and broad data here, this is some of my ownwork with my colleague, brenda jacobs, steve palmer and drew malin and others at penn,where we did a cross-sectional analysis of a 158 survivors. it was basically a waitingroom sample, so these were largely with breast and gynecological cancers but also with someprostate, lung and colorectal cancers. and these were 158 survivors who were studiedyear since diagnosis. we found in the waiting room sample that almost all of them showedat least one symptom that attributed to cancer

and on average, they recorded at least 10symptoms. you can see over at this graph here on the right, blue is male and pink is female;so a lot of issues that would surprise you around menopausal symptoms in the female populationswere certainly the memory concentrations, depression, anxiety, worry etc. we knew symptomprevalence as a problem that’s documented in many prior studies, what we were reallyspeaking to articulate here was that how are we doing with identifying and managing thesesymptoms. so we asked patients their perspectives on these. half of them said that they mayhave discussed these symptoms with their providers; half of them said that there was little tono improvements on the outcomes after discussion. this next statistic here then just mirrorsclosely another studies, “only 8% of these

individuals were referred to supportive careservices”, that may have helped them managing these symptoms.so all on these calling are unsure whether this survivorship care plan, this is one ofthe studies i lead in my role at penn. i lead a 13 person project looking at first describingthe status of survivorship care plan delivery across livestrong center of excellence andaffiliated academic and community cancer centers and then exploring the feasibility and outcomesof implementing a standardized process. so in the first phase we simply surveyed centersand asked them about what they were doing for their cancer survivors in terms of theircare planning. remember these were centers of excellence, given dedicated funding bylivestrong’s carry out survivorship care

and yet even here, we only looked at what’sbeing done for breast cancer survivors. almost two-thirds of the centers served less than10% of the breast cancer survivor patients. it was an onerous process of preparation anddelivery and a total of between 2 ⽠hour to 3 hours were spent per patient. so thatis the other reason for developing a technology to help what i would find in my own clinicalpractice as i was doing this research and designing clinical program development isthat it’s not just about bringing the individual disease and treatment data but harnessingthat together and bringing that in one place in providing treatment summary but then whatit is that you would do with that information. so i find when i sat with a patient in a roomwas to deliver them with a plan; so i was

asking questions about screening for a varietyof symptoms and concerns and then really on the fly in the room cracking an individuatedcare plan for them. and this is where the idea came to bear of why we can’t harnesstechnology to help us do this. there are evidence-based guidelines, rich body of evidence in the literatureon how to manage these things. if we could integrate screening for symptoms and concerns,integrate clinical data that we know about the person who are presenting to us with careand marry that knowledge against existing evidence, we could hopefully not only improvethe efficiency of care but also improve the quality of care and outcomes for this population.ultimately our vision as well on q health is certainly that we want to effect symptommanagement across the entire care trajectory,

especially during the active treatment periodso that we can provide better symptom outcomes and avoid costly health care utilizationsand also lead to poor quality of life in individuals of cancer. so here is that debonair data ingreater detail on this slide. you see that pain was the top reason folks presented forer visits and hospitalizations followed by dyspnea and gastrointestinal obstructions,fatigue, etc. i am going to tell you a little bit more aboutthe platform. the on q care planning system, the workflow of how we integrated it was thatthe patient completes a disease and treatment specific questionnaire on a mobile device,i.e. an ipad or sort of a tablet either prior to or at each clinical visit. the care teamenters the limited clinical data and the amount

of data is being needed to enter is decreasingvery quickly as we build interfaces with major electronic medical record vendors that arefrequently used here at the united states as well as integration with registry databases.so we would pull in from interfaces the data on the patient diagnosis and treatment characteristics.as you see down here at the bottom cloud, our platform incorporates a ruled engine thatis based on a web-based cloud, and takes those data from the patient and the care teams,and improves cds and clinical decision support and drafts a customized care plan that incorporatesevidence-based guidelines and other forms of evidence and helps quality standards aswell. it generates a care plan which then the oncologist or oncology care team includingnurse can use to counsel the patient on the

recommendations that the point of care andthen the patient walks away with an electronic copy as well as a paper copy. and as thishas integrated the way we have envisioned in the long haul and are actually happeningin one of the pilots and billings. if it’s done at each visit then when the patient returns,the patient actually can actually report in on whether the patient engaged on the recommendationsand the interventions recommended to them, what impact they had and therefore have acontinuous learning and adaption of the plan. this chart illustrates multiple ways we addressthe existing care gaps. we are impressed by how at cancer care ontario at least, thereis a systematic integration of epro-screening through the admins and symptoms assessmentscale at the point of care. it’s far from

being the case in the united states. we havepockets of that pulling on but typically when patients are seen at practice or our cancercare repair settings, screening for symptoms or concerns is very unsystematic. we haveregulatory mechanisms in place that say that we must screen for pain at every visit butbeyond that which other symptoms are screened for are very unsystematic. so we address thatin our system by embedding validating screening tools and in fact the mn is one of the toolswe integrate and is one of the tools that we used in the moffit cancer centre pilotproject. patient-reported outcomes are of course then collected in a structured waythat can be used for data analysis later. the real difference i think between us andothers, whether that be commercial or academic,

is that we don’t just stop there by providingsymptoms to clinicians, what they are and how they are changing over time, but we tiethis to personalized evidence-based recommendations that are rooted in current evidence and currentresearch and are continuously updated by our team. there is a lot of focus certainly inthe u.s. on adherence to quality control standards. one of the bigger programs in the u.s. isthe qopi initiative, the quality oncology practice initiative which cancer practiceshave to document their compliance with a variety of different quality metrics. for example,are they screening for pain, are they implementing an evidence-based care plan, etc. in a waythat we collect the data and tracks the intervention provided at the point of care, we can helpthe documents whether or not it is happening.

frankly, what is more important to me is forthe enabled centers to be proactive rather than reactive. you can do continuous qualityimprovement by looking at what was done in the past and trying to improve that but whatwe are really trying to drive the quality of care by is ensuring from the start thatcare is consistent with the quality and evidence-based practices. at least in the u.s. when a patientcomes in to the office for any visit whether it is diagnosis on –treatment or post-treatmentsetting, they are not typically walking out the door with a clear articulated care planfor what’s next and their role is in that and what they’re expected to do and whatresources are helpful and will often hand patients a one page check out sheet from ouremr for example at 10 that said okay your

next appoint is this and these are your medsthat were prescribed. and here are the list of your diagnoses, but that’s as detailedas it gets so were seeking to change that with our system.i’m going to skip through these next slides as they are a one page check out sheet fromour emr for example at 10 that said okay your with our system. i’m going to skip throughthese next slides because they are more us centric some of the quality initiatives justso you know we have developed initial care plan content for breast and gynecologicalfor lung cancer, myeloma under development right now as well as colorectal, prostate,lymphoma and others. the way we develop our content is through working with physician,nurse, rehab medicine, psychologist, nutritionist,

all kinds of faculty cancer care professionalacross the us to develop the content that comes in our care plan. so we have over 65topics and expanding over the care trajectory, and our approach in patient content if youlook at the right hand side of the slide we don’t typically develop our own educationalcontent for patients and families, what we do is embed links to faculty embedded wellestablished patient education tools and resources. on the left hand side you can see many ofthe guidelines that we incorporate into our care plan content and doris has been veryhelpful to us in integrating the capo, you see the capo symbol here for fatigue, anxiety,depression and other sleep included among them. i will present data next, and then ifwe have time i can give you a brief demo of

the platform. our first two foundational pilotfocused on evaluating feasibility, usability, satisfaction were our billings clinic in montanaand moffit, this list actually isn’t up to date anymore in terms of others, and inaddition to those you see the university of pennsylvania is piloting our platform anda number of others. so ill skip the demo for the moment and go into the presentation ofthe data so that i make sure i get to this part and whatever time we have before 1245i can give you a brief peak into the platform. so these are the data that we presented atthe asco meeting in october of this year, just for a little bit of history, we onlyreleased our first version of our platform 11 months ago. so february of 2014, and wekicked off our first pilot project at billings

clinic in the gynecologic cancer populationon active treatment in the end of february 2013. so they were our first pilot centerand largely used the platform in a population of advanced ovarian cancer patients at multiplevisits while receiving active chemotherapy treatment. four months later moffitt cameon board and piloted our platform starting end of june 2014, in largely post treatmentbreast cancer population. but this is very purposely titled supportive care plans whichis what we call our care plans for managing active symptoms and concerns across the carecontinuum because at moffit even though they largely were looking at post treatment breastcancer population. they didn’t evaluate what you would consider a classic survivorshipcare plan with that treatment summary, surveillance

plan for follow up and the education aboutlate effects of what to report and how to prevent them. what they did was use the samecore supportive care planning to screen for active symptoms and concerns and manage themin largely post treatment breast population, does that make sense? i think the answer isyes. between these two sites we consolidated the data even though they were in two differentpopulations, gyn on treatment, breast post treatment. because the aims here were reallyabout feasibility, usability and satisfaction. this is a very busy slide, you’ve hearda lot of what i said already, so i’m just going to hit the highlight. the goal herewas to enroll 100 patients and their providers in the study, 50 gyne on treatment, 50 womenlargely post treatment. and that each patient

coming through on this study would fill outan epro assessment at the point of care and then be given an electronically generatedpersonalized supportive care plan by their care team during their office visit over a3 month period. at moffitt and the breast population because it was a follow up patientpopulation. they got only one care plan. at billings since it was an on active treatmentgyne cancer population, largely ovarian. they typically got about 3 care plans per patient,and we specifically looked feasibility and usability of the platform from both patientand provider perspective. we did those evaluations from a posttest only perspective and we usedboth patient and provider surveys as well as look at the statistics from platform datafor example, what percent of questions did

patients answer in the questionnaire. so didthey get through completing it etc. our goal was to also look at adherence tothe care plan and recommendations by doing a posttest survey, so that after the patienthad the visit an got the care plan we would query them later, about 6 weeks later. sayyou were told in this care plan to go exercise or fatigue, did you do it? how helpful wasit? and why or why not? that analysis i won’t present today, were still under analysis soi’m really going to present today the feasibility, usability, and satisfaction. what you’llsee here is at the time we presented the data at asco in october, we only had a total of64 patients, 43 at moffit in the breast population and 19 billings clinic in the gyne population.there are a variety factors that influence

why billing didn’t enroll as many in a longerperiod of time including changes in leadership and other institutional factors. so what we’relooking at here though in terms of the actual data presented at asco is only 23 patientsthat we had comparative data on. because not all of the folks had gotten 6 week followup time point yet. so you'll recognize that this is very preliminary data. i didn't updateit for today's talk as we didn't have time to another formal analysis of these data.we’re in a midst of preparing an abstract for presentation at another meeting so illhave updated data later. so a total of 23 patients with pre and post test data and atotal of 10 providers, the nccc means nationally designated comprehensive cancer center, that'smoffitt. and ncccp was an nci designated community

cancer care program which was billings. soour results and sum showed high patient provider and satisfaction, feasibility and usabilityincluding improvements in communication. i’m going to get down into a little details firstabout the qualitative data in addition to doing feasibility and usability data, we didalso did interviews with patients and providers. i present to you here some select quotes fromour patient interview today, so the sayings that have come out from qualitative analysis.that initial cut of data analysis of improving communication with provider, proving helpfuland accessible information. and utility for managing symptoms, some of the quotes yousee here are care plan and the assessment reminded me to bring up issues. helps drivethe discussion at the visit and gave my doctor

a better overall picture of what’s goingon with me. i was able to touch on all key points, my visit was much more thorough becauseof the care plan and it provides hopeful information that everything i need was right there. onepatient even commented on how she helped another patient, a relative out by sharing her personalcare plane with that relative because the symptoms of concern of this relative.there were a lot of comments about wishing they had exposure to this care plan earlierin their care trajectory. prior to being involved in this study. even the gyne cancer populationwhose picked up many of those women maybe 3rd 4th cycle into a 6-8 course of carbotacsol.typical chemotherapy for gyne cancer. what we heard form providers and at that time wehad only interviewed 4, but now we have interviewed

8 providers to date at the 2 centers. eitherdirect quotes about improving efficiency by helping summarize not only symptoms and concernsbut then providing tailored care plans that automatically brought in recommendations andresources for their patients. helps focus the visit, allows me direct the encounterto patients needs goals and care. and one of them even said it’s so great, it’swhat you and i would want if we had cancer. so in terms of the quantitative data, patientsatisfaction with the care plan was on average 3.8 across the board on a 1-5 scale in termsof usefulness, communication, management of cancer care resources and recommendationsto others. patients said it was highly usable, the numbers at red at the bottom you wantthem to be low, the max scale is 0-100 here

so the things that they stated were that theywere easy to use, confident using, and at the bottom there were some concerns aboutit maybe being a bit more streamlined. some that we’ve been focused on, provider satisfactionagain, the providers actually rated the care plan a little higher than the patients. soon a 1-5 scale the average score on total was 4.5 and i’m breaking that out by itemto show some of the more granular points about satisfaction. recommending others to use,helps me address patients concerns and treatments, would recommend as clinical decision support.by the way these measures we composite of measures developed by others peoples studiessuch as donna berry's work that we adapted for use in this study. providers reportedhigh usability as well. some cumbersome, awkward

to use when we drilled down into that more.a lot of that came from that interaction at billings clinic when patients came back infor 2nd, 3rd or greater visits. what we've not yet developed well enough in our platformis how these care plans adapt to change in symptoms over time, and so when we drilleddown into this statistic in our qualitative interview data, that was a large source ofthis is that the first visit it was extremely helpful that we clearly needed to get moresophisticated about adapting the recommended intervention once patients move beyond thatfirst visit. so that's a key focus of development for us now and we have a couple grants helpingus to address that.