Towards Patient Centered Governance

1. Towards Patient Centered Governance An explorative study on the role and function of patients in Dutch health care Eelko den Breejen MSc Kim Putters, PhD Pauline Meurs, prof.dr. Section Health Care Governance Institute Health Policy and Management Erasmus University Rotterdam

2. Research question: How can the position and influence possibilities of patients in Dutch health care be understood and what are the possibilities for a patient centered governance? Secondary questions: How is the patient perspective embedded in Dutch health care governance? What are the conditions for patient centered governance? What are (im)possibilities to strentghen patient centered governance? Research question and secondary questions

3. Theoretical Framework (1) The meaning of ‘Governance’ • Shift from government to governance • Three types of relations: • Steering and Supervision (state) • Demand and supply (market) • Expectation and Accountibility (community) • Checks and balances Hybrid environment • State – Market – Profession – Community

4. Theoretical Framework (2) • Principal-Agent relationship • Individual and collective participation • Consumer (individual) • Citizen (collective) • Patient (individual)

5. Theoretical Framework (3) Patient centered governance … is about the role and influence of individual patients and patient representatives in health care policy and decision making by using an adequate mix of instruments. That – of course – leaves us with the question, what is an adequate mix of instruments and what influence does this have?

6. Case studies • Maximal variance: • Different market segments: • Chronic care • Acute, complex care • Elective care • Hospital care • Individual participation possibilities • Collective participation possibilities

7. Empirical Findings: patient centered governance on the individual level • Dialogue • To analyze the wants, demands and needs of patients. • To connect the patient needs with the medical problems. • ‘Justified wants’ • To achieve partnership between patient and professional. • Self organization • Use of the Individual Budget (PGB) • Alliance / Partnership • New technologies leading to (equal) partnerships between patients and professionals.

8. Empirical Findings: patient centered governance on the collective level • Shareholder model • Medical specialists, nurses, general practitioners and patients. • Ending of the Supervisory Board. • Patient Platform in collaboration with patient organizations. • Client councils • Representation problems • Intermediate structures • To lobby.

9. Analysis: the gap between policy and practice • Legislation shows emphasis on the individual patient as consumer, but in practice: • A lot of variety in instruments (communicative;technological, financial). • A lot of variety in the level of influence. • So: a lot of variety in dependency causes variety in instruments and variety in influence

10. Analysis: conditions for effective patient centered governance • Taking into account the different levels of dependency of patients • Varying in governance arrangements according to the nature of professional care • Connecting the patient level with the policy level • Taking into account the dynamic, hybrid environment by using a mix of (policy) instruments

11. Issues • The instrumentalisation of the patient perspective: • Difference between legislation and practice. • Creating normsfor good carein practice(with the patient): • ‘justified wants’

12. Questions • What balance should there be between individual and collective empowerment? • Should there be more or less emphasis on representation? • Should patient organisations reverse their influencing strategies from top down to bottum up in order to bridge the gap between policy and practice? • What do you think are the important developments and options for patient centered governance?

13. Thank you for your attention! Please, for further inquiries and comments: e.denbreejen@erasmusmc.nl