1. User-centred care In search for a participative approach Maarten de Wit Maastricht, April 3 rd, 2012 Annual Caphri research meeting

2. Overview Definition of user centred care? Arguments for participative care and development Challenges 1.Value of experiential knowledge 2.Who to involve? 3.Representativeness 4.Enabling contributions Conclusions 2

3. Definition of user centred care?

4. 1988 2011

5. User centered health care is not a state, it is a process

6. Patients are invited to be actively involved First signs of a paradigm shift in health care Shared decision making They take responsibility over their own lifes

7. Why actively involving patients in health care? 1.Ethical argument In a democracy patients have the right to speak for them selves 2.Content argument Experiential knowledge makes health services more relevant and fitting better with the context of daily life 3.Political argument Legitimacy and chances for implementation increase 4. Relational empowerment Source: Abma & Broerse, 2007 Control in science Patient participation in theory and practice Abma & Broerse 2007

8. Patients´ involvement in all areas of health care is irreversible - A transition process 8 Influencing health care policiess Education of health professionals Developing guidelines and quality indicators Health care research Innovations in health care delivery Economic evaluation of health interventions Patients´rights and patients´ duties

9. How do perspectives differ? Person Family Relations Work Sports Hobby Autonomy Living Sex Disease Pain X-rays Disease ESR, CRP Stiffness Functional limitations Rheumatologist Person with Rheumatoid Arthritis Kvien, T.K. and T. Heiberg, Patient perspective in outcome assessments--perceptions or something more? The Journal of rheumatology, 2003. 30(4): p. 873-6. Hewlett, S.A., Patients and clinicians have different perspectives on outcomes in arthritis. The Journal of rheumatology, 2003. 30(4): p. 877-9. Leeb, B.F., et al., Lack of agreement between patients' and physicians' perspectives of rheumatoid arthritis disease activity changes. Scandinavian journal of rheumatology, 2006. 35(6): p. 441-6.

10. Patient perspective is heterogeneous Person Family Relations Work Study Hobbys Autonomy Living Sex Disease Patient APatient B Person Family Relations Work Sport Hobbys Autonomy Living Sex Disease Call for personalized care and patient reported outcomes Biopsychosocial model ICF Experiential Knowledge

11. Challenge 1 Value of experiential knowledge

12. Example 1 Pre-surgery medication Patient information letter regarding out-patient surgery Will I be able to drive my car after the surgery?

13. Example 2 Spinal stiffness Recommendation for MRI scan procedure for people with Ankylosing Spondylitis for 40 minutes You dont expect me to lay still for 40 minutes? Do you realize that not only moving hurts?

14. Example 3 Secondary symptoms Strong emphasis on basic research and acute high tech innovations for people with spinal cord injuries We want more attention for secondary symptoms like increasing overweight, food, going to the toilet and sores.

15. Priorities & preferences Patients have outspoken ideas about their preferences, expectations, desires and goals. These preferences and ideas are complementary to the expertise of health professionals. In doctor-patient communications these preferences are often not exchanged or expressed. Patients should take responsibility for sharing these preferences.

16. Value of experiential knowledge Enriches the scope of health professionals Increases the quality and practical value of health care services Empowers health users Empowers health carers Definition of EBM: The integration of best research evidence with clinical expertise and patient values * Sackett D, Straus S, al. e. Evidence-based medicine. How to practice and teach EBM. Edinburgh: Churchill Livingstone; 2000.

17. Challenge 2 Who should I involve?

18. Selection Big debate Recruitment? Selection criteria? Competences ? Learning curve!

19. Challenge 3 Representativeness

20. Be pragmatic Dont overestimate the issue of representativess Dont forget minorities Respect for ambiguity

21. Challenge 4 Enabling inclusion and contributions

22. Pivotal role of the professional Make user involvement an integral part of project management Use interactive or participative methodologies Emergent project designs Respect for ambiguity Differentiate between levels of involvement Terminology Practicalities: venue and time Preparation Communication

23. Competences of the project leader Abma & Broerse, 2007 Teacher Facilitator Researcher Organisator Building bridges Socratic guide Mediator Reflexive Creative Open mind Tolerant for ambiguity Flexible Empatic Establish Collaboration Promote learning Do Research Enhance communication Support Patients Roles Tasks Qualities

24. Conclusions 1.Experience-based knowledge is complementary to the evidence based knowledge of professionals. 2.User centred care is not a state but an approach 3.A participatory approach of health care – with respect for patient values and preferences - may Avoid the narrow sighted approach of professionals; Enhance innovative solutions; Bridge the gap between patients and professionals to improve health care services and produce trust among patients; Establish health strategies that address the needs of patients; Give legitimacy to what you do. 4. Health professionals play a crucial role in enabling users to take responsibility and to contribute.

25. 25 Thanks for your attention