Onco-Compass
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Dr. Cornelia Van Uden Kraan

Dr. Cornelia Van Uden Kraan
Project manager OncoCompass
Senior researcher “Living together with cancer”
VU University Medical Center
Amsterdam, The Netherlands

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    Onco-Compass Onco-Compass Presentation Transcript

    • “Experiència OncoKompas”A personal eHealth portal for cancer survivorsNelly van Uden-Kraan PhD
    • My background• Master• Communication in health care• PhD study• Online peer support for patients with somatic diseases• University of Twente, Enschede, The Netherlands• Current position• Postdoctoral researcher “eHealth” and project manager OncoKompas• VU University Medical Center, Amsterdam, The Netherlands
    • Research groupLiving together with cancer
    • eHealth projectsSelf care portal LARInX Self help intervention HeadmattersDecision aid prostate cancer OncoKompas
    • Introduction: OncoKompas• Personal eHealth portal for cancer survivors• Structured monitoring quality of life• Decision support algorithms• Personalized information and advice• Intervention mapping / stepped care programs
    • Overview presentation1. eHealth2. Cancer survivorship care3. OncoKompas
    • 1. eHealth
    • Definition of eHealth“eHealth is an emerging field in the intersection of medical informatics, public health and business referring to health services and information delivered or enhanced through the Internet and related technologies. In a broader sense the term characterizes not only a technical development, but also a state state-of-mind, a way of thinking, an attitude and commitment for networked, global thinking to improve health care locally, regionally and worldwide by using information and communication technology” (Eysenbach, 20012001)
    • Internet technology: Web 2.0User generated content
    • eHealth interventions in oncology• Online patient information and education• Online diagnosis• Online support treatment choices• Online treatment• Online communication between patients• Coordination of care via eHealth « Drossaert & van Gemert-Pijnen, 2010
    • Example: informative websites
    • eHealth interventions in oncology• Online patient information and education• Online diagnosis• Online support treatment choices• Online treatment• Online communication between patients• Coordination of care via eHealth « Drossaert & van Gemert-Pijnen, 2010
    • Example: online diagnosis
    • eHealth interventions in oncology• Online patient information and education• Online diagnosis• Online support treatment choices• Online treatment• Online communication between patients• Coordination of care via eHealth « Drossaert & van Gemert-Pijnen, 2010
    • Example: patient decision aid
    • eHealth interventions in oncology• Online patient information and education• Online diagnosis• Online support treatment choices• Online treatment• Online communication between patients• Coordination of care via eHealth « Drossaert & van Gemert-Pijnen, 2010
    • Example: Headmatters
    • eHealth interventions in oncology• Online patient information and education• Online diagnosis• Online support treatment choices• Online treatment• Online communication between patients• Coordination of care via eHealth « Drossaert & van Gemert-Pijnen, 2010
    • Example: Online peer support groups
    • eHealth interventions in oncology• Online patient information and education• Online diagnosis• Online support treatment choices• Online treatment• Online communication between patients• Coordination of care via eHealth « Drossaert & van Gemert-Pijnen, 2010
    • Example: Electronic Medical Record
    • High expectations of eHealth• eHealth is considered one of the most important ways to cope with an increasing and changing demand for care• eHealth is expected to improve the position of patients and health care consumers in current health care practice• How to live up to these high expectations?
    • Barriers• Unequal access• Unfamiliarity and ignorance• Resistance in patients• Resistance among care professionals• Technical limitations• Supply / demand matching• Unclear regulation• Appropriate business models are missing « Drossaert & van Gemert-Pijnen, 2010
    • Framework to Improve the Uptake andImpact of eHealth Technologies «van Gemert-Pijnen, Nijland, et al. 2011
    • Contextual inquiry• What is the problem, or need, in health care?• Who are the key stakeholders to address the problem problem? «van Gemert-Pijnen, Nijland, et al. 2011
    • Value specification• Which improvements and changes in health care are desired by the stakeholders?• Which values do stakeholders allocate to a solution through technology? «van Gemert-Pijnen, Nijland, et al. 2011
    • Co-Design• What are the technical requirements for the design?• What are persuasive and communication requirements for the design? «van Gemert-Pijnen, Nijland, et al. 2011
    • Operationalization• How can technology be implemented in practice?• What activities and resources are needed for successful implementation? «van Gemert-Pijnen, Nijland, et al. 2011
    • Summative evaluation• Are the goals and effects, as previously defined, achieved?• How is technology used in everyday practice? «van Gemert-Pijnen, Nijland, et al. 2011 «Based on DeLone & McLean IS Success Model
    • 2. Cancer survivorship care
    • Cancer incidenceIncidence in the Netherlands in 2011• 95,000 new patientsEstimated cancer incidence in Spain in 2015• 222,069 new patients
    • Cancer survivorshipIncreased knowledge of:• Cause of cancer• Treatment of cancer→ increased life expectancyPrevalence in the Netherlands in 2011• 570,000 people living with cancer
    • Quality of life in cancer survivors• Fatigue• Anxiety / fear of recurrence• Depression• Sexuality / intimacy• Physical fitness• Cognitive problems• Pain• Insomnia• Nutrition• Return to work
    • Supportive care• Supportive care in cancer is the prevention and management of adverse effects of cancer and its treatment across the cancer continuum• Supportive care services have extended across the survivorship continuum to address the concerns and needs of cancer survivors «Surbone and Peccatori, 2006; Hodgkinson et al., 2007
    • Barriers to supportive care• Lack of awareness• Subjective judgments about need for supportive care services• Unwillingness to be referred to supportive care because of the long treatment period endured• Inadequate referral by care professionals – disposal over only part of the relevant information – symptoms, like sexuality issues, more difficult to introduce and discuss
    • Patient centred care
    • Screening for supportive care needs Behavior What we do and see → Observations ------------------------------------------- Attitude, perception, emotions What we think or feel → Interviews Questionnaires
    • OncoQuest
    • OncoQuest quality of life profile EORTC QLQ C30 Hospital anxiety and depression scale
    • Care navigator
    • 3. OncoKompas
    • OncoKompas Development cycle Studies Needs assessment among patients and care providers Effectevaluation Designing program User performance and satisfaction Cognitive walkthrough by experts Usability Feasibility study testing (Cost)effectiveness Implementation study
    • Development cycle OncoKompas (1)• Online survey among cancer patients (N=339)• Qualitative needs assessment HNC and BC patients (2 x N=15)• Qualitative needs assessment multidisciplinary oncology team (N=11) (interviews and observations)• OncoKompas prototype (OncoKompas 0.1)• Usability study with focus on technology (using Morae) (N=9)• Developing content with multi- -disciplinary team of experts (care professionals and patients)• OncoKompas 1.0
    • Development cycle OncoKompas (2)• Cognitive walkthrough care professionals (N=20)• Usability study among HNC patients with focus on content and service (using Morae) (N=11)• OncoKompas (OncoKompas 1.1)• Feasibility study among 105 HNC patients VUmc, LUMC, Maastricht University Medical Center Including qualitative process evaluation (N=25)• OncoKompas (OncoKompas 2.0) (including all tumour specific modules)
    • Highlights quantitative surveyInformation about impact on quality of life• 44% of oncology patients indicated that they had received insufficient information on the impact of cancer on their quality of lifeNeed for help• 64% for physical complaints• 53% for lifestyle change• 40% for psychological problems• 39% for social problems• 24% for life questions
    • Highlights needs assessment (1) eHealth in supportive care • The majority were of opinion that an e e-health portal was of added value to usual follow-up cancer care up • Most patients mentioned to be overwhelmed by experienced side effects after finishing cancer treatment “I think a website is a • Expected advantages: addressing unmet supportive care needs very good thing. That “What(mainly psychosocial) and 24-h availability you are able to find all of it lacks is nuance. Nuance hthat you do have in a conversation. the information on just Expected disadvantages included: a lack of nuance and you don’t You •should use it for exchanging one site, so personal information. Sharing feelings and have to search from one contact site to another.” that sort of thing is difficult.”
    • Highlights needs assessment (2)Monitoring quality of life• The main advantage of monitoring their own quality of life was to increase insight into experienced side effects• Mainly those participants who (had) experienced side effects for a longer period of time were interested in monitoring “It can provide you with a more realistic picture. Because if you feel very bad now, you have the feeling that you always feel rotten."
    • Highlights needs assessment (3) Personal advice concerning side effects • Information related to experienced side effects (physical and psychosocial) should be tailored to specific tumor type and include an indication of how long these will last“The nausea, appetite: care Supportive cancer • Advice concerning when to look for supportive care and where what to expect, anindication of how long supportive care in their own surroundings they could go forit will last, that type of “What if you lose your job, information.” where do you go should • To fulfill unmet supportive care needs an ee-health portal for help? Is it possible to see a social include personalized information and advices regarding worker? Those are the physical and psychosocial (including financial) issues,things.” important and lifestyle
    • Highlights needs assessment (4)Requirements for usage• Non-obligatory• Easy to use• Anonymous• Reliable (i.e. initiated by patients’ hospital) i.e.• Ability to ask questions or call a helpline
    • Preferred design (1)
    • Preferred design (2)
    • OncoKompas
    • Highlights usability study (1)
    • Highlights usability study (2)
    • Highlights usability study (3)Improvements on usability• Registration and log on process should be simplified• Purpose of OncoKompas should be explained more clearly• More explicit and more instructions should be provided• The layout of the pages should be improved: ‘next’ button visible without scrolling down• OncoKompas should run faster
    • Highlights needs assessment careprofessionals (1)eHealth in supportive care• Care professionals were of opinion that an e e-health portal could be a valuable addition to cancer survivorship careExpected benefits• Create an overall picture of the patient’s state "I think it can of well well-being complement the patient• Trigger the healthcare provider to talk about a particular health health- contact, because it related subject might give some• Provide an overview of available supportive direction to your care options• Provide support in the optimization of post contact incare and post-treatment advance. making of a treatment plan That you just know ‘Oh, I must pay attention to…’"
    • Highlights needs assessment careprofessionals (2)Requirements for usage• Information should be concise• Easy to consult (e.g. via EMR) "The information must be concise, of course you have just a few minutes for the patient. I think that the workability of an e-health portal makes it or breaks it”
    • Expert team• dr. R. (Remco) de Bree, hoofd-hals chirurg, VUmc hals• dhr. N. (Niek) Golstein, verpleegkundig specialist oncologie i.o, St Antoniusziekenhuis (Nieuwegein), en Voorzitter Special Interest Group Psychosociale Zorg V&VN• drs. C. (Corien) Eeltink, verpleegkundig specialist oncologie, VUmc• mevr. A. (Ans) van Stijgeren, diëtiste, VUmc• mevr. F. (Francine) Eskens, medisch maatschappelijk werker, VUmc• drs. M. (Martijn) Stuiver, fysiotherapeut en klinisch epidemioloog, NKI NKI-AVL• dhr. E. (Edwin) Gelein, fysiotherapeut, VUmc• dr. S. (Saskia) Duijts, senior onderzoeker, sociale geneeskunde,VU• dr. J. (Joël) Vos, psycholoog en filosoof, VU• dhr. A.M. (Ad) de Bruine, patiëntenvereniging NSvG voor stembandlozen• dhr. D. (Dirk) Vroom, Stichting Klankbord,• mevr. E. (Ella) van Dienst, Stichting Klankbord• mevr. dr. A. (Annelies) van Aller, BVN• mr. S.M.Q. (Saskia) Janson, stichting Olijf
    • tumor specific ENT loss of tastediarrhea speech or smellconstipation lymphoma swallowingnausea mouthor hearing functioningvomitinglack of shoulder appetite dyspnea functioning
    • Public website www.oncokompas.nl
    • Clinical decision support system
    • Selection Follow Up Providers Evidence based Consensus based Safe Feedback effectiveness NO YES
    • Design feasibility study (1)Objective feasibility study:• To evaluate applicability of OncoKompas in clinical practice in patients with head and neck cancer in order to further optimize OncoKompas
    • Design feasibility study (2)• Step 1 baseline measurement in the three participating centers (35 patients per center)• Step 2 OncoKompas is made available to the three participating centers of which the 35 patients will use OncoKompas• Step 3 a quantitative (satisfaction) survey is conducted among participants (N = 105). In addition, 25 participants will be interviewed to share their experiences with OncoKompas
    • First goal: national implementationThe first goal pursued is implementing theOncoKompas in all hospitals (N = 100) in TheNetherlands
    • Ultimate dream: global roll out of OncoKompas
    • Questions Contact information cf.vanuden@vumc.nl