User-centred care In search for a participative approach

1. AnnualCaphri research meeting User-centred careIn search for a participative approach Maarten de Wit Maastricht, April 3rd, 2012

2. Overview • Definition of user centred care? • Arguments for participative care and development • Challenges • Value of experientialknowledge • Who to involve? • Representativeness • Enablingcontributions • Conclusions

3. Definition of user centred care?

4. 1988 2011

5. User centeredhealth care is not a state, it is a process

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

7. Whyactivelyinvolvingpatients in health care? • Ethical argument In a democracypatients have the right to speakforthemselves • Content argument Experientialknowledgemakeshealth services more relevant and fitting betterwith the context of dailylife 3. Political argument Legitimacy and chancesforimplementationincrease 4. Relationalempowerment Control in science Patient participation in theory and practice Abma & Broerse 2007 Source: Abma & Broerse, 2007

8. Patients´ involvement in all areas of health care is irreversible - A transition process Influencinghealthcare policiess Innovations in healthcare delivery Health care research Patients´rights and patients´ duties Developingguidelines and quality indicators Economicevaluation of healthinterventions Educationof health professionals

9. How do perspectives differ? Person Person Relations Pain X-rays Disease ESR, CRP Stiffness Functional limitations Autonomy Work Family Sex Living Hobby Disease Sports Person with Rheumatoid Arthritis Rheumatologist 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 Person Experiential Knowledge Relations Relations Autonomy Disease Work Work Family Sex Family Disease Sex Living Living Hobby’s Hobby’s Autonomy Disease Study Sport Patient A Patient B Call for personalized care and patient reported outcomes Biopsychosocial model ICF

11. Challenge 1 Value of experientialknowledge

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 don’t 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 outspokenideasabouttheirpreferences, expectations, desires and goals. • These preferences and ideas are complementary to the expertise of health professionals. • In doctor-patientcommunications these preferences are oftennotexchangedorexpressed. • Patientsshouldtakeresponsibilityforsharing 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 Whoshould I involve?

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

19. Challenge 3 Representativeness

20. Be pragmatic • Don’toverestimate the issue of representativess • Don’tforgetminorities • Respect forambiguity

21. Challenge 4 Enablinginclusion 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 Roles Qualities Teacher Facilitator Researcher Organisator Building bridges Socraticguide Mediator Reflexive Creative Open mind Tolerant forambiguity Flexible Empatic Tasks EstablishCollaboration Promote “learning” Support Patients Do Research Enhancecommunication Abma & Broerse, 2007

24. Conclusions • Experience-basedknowledge is complementary to the evidencebasedknowledge of professionals. • User centredcare is not a state but an approach • 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. Thanks for your attention