1. Quality enhancement through online patient-communication Prof dr. Jan A.M. Kremer Nijmegen, The Netherlands @JKNL, jan.kremer@radboudumc.nl PCC 10: Current information & communication Lisbon, 14 June 2015 2. Potential conflicts of interest Gynaecologist and Professor in patient-centred innovation, Radboud University Medical Centre, Nijmegen (NL) Advisor Strategy&, Amsterdam (NL) Member of the Advisory Committee of the National Quality Institute Member of the National Council for Healthcare and Society (RV&S) 3. Learning objectives Know different kinds of online communication in reproductive medicine Online access to medical data Forum, chat, communities Wikis Online clinics Personal Health Communities Understand different moral concepts behind online patient communication Duty-based, virtue-based and consequence-based Understand the personalization trend in online communication and its consequences 4. Warming up: ePatient Dave 5. Inspired by patients (2001) 6. Digital IVF clinic (2003) General information 1.0 interviews, education leaflets Personal Health Record lab results, pictures, letters Communication chat and forum (P2D & P2P) 7. Get information Access your own data Chat with peers Ask questions 8. > 10 years successful > 5000 participants ( 80%) > 100.000 forum items Evaluation Digital IVF clinic Patients are the motor More trust, better culture Less complaints, many prizes Foto: Roland Nooteboom, 2006 9. Usefulness Use (page views) General information (top 3) 1. Frequently Asked Questions 2. Information about the clinic 3. Information about the treatment 88 % 67 % 63 % 8 9 62 Personal information (top 3) 1. Medical Record 2. Day planner 3. Embryo photos 96 % 92 % 79 % 36 30 50 Communication (top 3) 1. E-mail 2. Discussion forum 3. Chat 96 % 92 % 79 % 2 140 45 Tuil et al. Hum Reprod. 2006: 2955-9. Use and usefulness 10. 0 2 4 6 8 10 12 T1 T2 T3 T4 T5 T1 T2 T3 T4 T5 T1 T2 T3 T4 T5 Pageviewspervisitorperday(CI) Generic Information Patient specific Information Communication T1: pretreatment T2: stimulation T3: opu&et T4: luteal phase T5: posttreatment Tuil et al. Fertil Steril. 2009; 953-6 Page views per treatment phase 11. Tuil et al. Hum Reprod. 2008:2501-5 Personal information style Sharing emotions (p=0.03) Paid employment (p=0.01) Determinants Generic information style Depression (p=0.03) Communication style Anxiety (p=0.01) Paid employment (p=0.02) Three types of behavioural styles 12. MyRadboud Available for all patients in our hospital 13. Patientcentredness (2001) Being respectful of and responsive to individual patient preferences, needs and values; and ensuring that patient values guide all clinical decisions. (Institute of Medicine, 2001) One of the dimensions of Quality of Care: 1. Safety 2. Effectiveness 3. Efficiency 4. Timeliness 5. Equity of access 6. Patient centeredness 14. 1. Access to care 2. Respect for patient's values, preferences, needs 3. Coordination and integration of care 4. Information, communication and education 5. Physical comfort 6. Emotional support and alleviation of fear and anxiety 7. Involvement of family and friends 8. Transition and continuity Dimensions of patientcentredness 15. Patient-centred PhD thesis 16. Online wiki as a tool for patients Patient education leaflets Guideline development Tom van de Belt Elvira den Breejen J Med Internet Res 2013 J Med Internet Res 2012 17. Self management to prevent stress and anxiety during IVF Digital coach (mental support) van Dongen, Hum Reprod, 2012 18. Personal Health Record (PHR) www.mijnzorgnet.nl 19. First evaluation of PHRs in fertility care Aarts JW, Health Expectations 2014 "I got a miscarriage. The gynecologist's reaction to this bad news in my PHR was really fast. On the one hand, it was of course disappointing, but on the other hand it felt like someone was embracing me. Qualitative study: PHC is a powerful tool that improves: personal support accessibility of care patient autonomy patient/professional relationship 20. FertiScreen (decision support) Helga Schouten: work in progress, 2015 21. Online Fertility Clinic for advice and coaching FertilityConsult Kremer J & de Bruin JP, work in progress, 2015 22. Why is an online intervention good? Duty ethics Virtue ethics Consequences ethics Duggan et al. Patient Education and Counseling 62 (2006) 271 23. Person Based Medicine The patient as a person will be the new paradigm for medicine 1. Patients are no things 2. Doctors are no robots 3. Cost explosion 4. Personalised medicine 5. Internet revolution Authority Based Medicine (ABM) Mechanism Based Medicine (MBM) Evidence Based Medicine (EBM) Person Based Medicine (PBM) 24. Internet revolution (1) CRM Customer Relationship Management Customers Vendors 25. Internet revolution (2) VRM Vendor Relationship Management Customers Vendors 26. Learning objectives Know different kinds of online communication in reproductive medicine Online access to medical data Forum, chat, communities Wikis Online clinics Personal Health Communities Understand different moral concepts behind online patient communication Duty-based, virtue-based and consequence-based Understand the personalization trend in online communication and its consequences 27. Next steps in reproductive care 2.0 Do not overplan take babysteps Voyage of discovery Based on PBM 28. We are quite disappointed in your website: no Digital IVF Clinic, no DigiCoach, no FertiScreen, no PHR, no Wiki, no FertiConsult How static & top-down! As modern care consumers, we want more than just being treated! 29. Bibliography Tuil WS, ten Hoopen AJ, Braat DD, de Vries Robbe PF, Kremer JA. Patient-centred care: using online personal medical records in IVF practice. Hum Reprod. 2006 Nov;21(11):2955-9. Van Dongen AJ, Kremer JA, Van Sluisveld N, Verhaak CM, Nelen WL. Feasibility of screening patients for emotional risk factors before in vitro fertilization in daily clinical practice: a process evaluation. Hum Reprod. 2012 Dec;27(12):3493-501 van Empel IW, Aarts JW, Cohlen BJ, Huppelschoten DA, Laven JS, Nelen WL, Kremer JA. Measuring patient-centredness, the neglected outcome in fertility care: a random multicentre validation study. Hum Reprod. 2010 Oct;25(10):2516-26. Huppelschoten AG, Nelen WL, Westert GP, van Golde RJ, Adang EM, Kremer JA. Improving patient-centredness in partnership with female patients: a cluster RCT in fertility care. Hum Reprod. 2015 Mar 6. pii: dev041. Aarts JW, Vennik F, Nelen WL, van der Eijk M, Bloem BR, Faber MJ, Kremer JA. Personal health communities: a phenomenological study of a new health-care concept. Health Expect. 2014 Mar 19. doi: 10.1111/hex.12177 Institute of Medicine. Improving the 21st century healthcare system. Crossing the Quality Chasm. A New Health System for the 21st Century. Washington, DC: National Academy Press, 2001,3960 Duggan PS, Geller G, Cooper LA, Beach MC. The moral nature of patient-centredness: is it "just the right thing to do"? Patient Educ Couns. 2006 Aug;62(2):271-6. Epub 2005 Dec 13. Review.