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

Research question and secondary questions

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?

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

Theoretical Framework (2)

Principal-Agent relationship

Individual and collective participation

Consumer (individual)

Citizen (collective)

Patient (individual)

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?

Case studies

Maximal variance:

Different market segments:

Chronic care

Acute, complex care

Elective care

Hospital care

Individual participation possibilities

Collective participation possibilities

Empirical Findings: patient centered governance on the individual level

Dialogue

1. To analyze the wants, demands and needs of patients.

2. To connect the patient needs with the medical problems.

• ‘Justified wants’

3. 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.

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.

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

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

Issues

1. The instrumentalisation of the patient perspective:

Difference between legislation and practice.

2. Creating norms for good care in practice (with the

patient):

‘justified wants’

Questions

1. What balance should there be between individual and collective empowerment?

2. Should there be more or less emphasis on representation?

3. 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?

Thank you for your attention!

Please, for further inquiries and comments:

e.denbreejen@erasmusmc.nl