User-centred careIn search for a participative approach

Maarten de WitMaastricht, April 3rd, 2012

Annual Caphri research meeting

Overview

Definition of user centred care? Arguments for participative care and development Challenges

1. Value of experiential knowledge2. Who to involve?3. Representativeness4. Enabling contributions

Conclusions

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Definition of user centred care?

1988 2011

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

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 life’s

Why actively involving patients in health care?1. Ethical argument

In a democracy patients have the right to speak for them selves

2. Content argumentExperiential knowledge makes health services more relevant and fitting better with the context of daily life

3. Political argumentLegitimacy and chances for implementation increase

4. Relational empowerment

Source: Abma & Broerse, 2007

Control in science

Patient participation in theory and practice

Abma & Broerse2007

Patients´ involvement in all areas of health care is irreversible - A transition process

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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

How do perspectives differ?Person Person

Family

Relat

ions

Work

Sport

s

Hobby

Autonomy

Living Sex

Disease

PainX-rays

DiseaseESR, CRPStiffness

Functionallimitations

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.

Patient perspective is heterogeneous

Person

Family

Relatio

n

sWork

Study

Hobby’s

Autono

my

Living Sex

Disease

Disease

Patient A Patient B

Person

Family

Relat

ions

Work

Sport

Hobby’s

Autonomy

Living Sex

Disease

Call for personalized care andpatient reported outcomes

Biopsychosocial modelICF

Experiential Knowledge

Challenge 1

Value of experiential knowledge

Example 1 Pre-surgery medication

Patient information letter regarding out-patient surgery

“Will I be able to drive my car after the surgery?”

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?“

Example 3 Secondary symptomsStrong 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.”

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.

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.

Challenge 2

Who should I involve?

Selection

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

Challenge 3

Representativeness

Be pragmatic Don’t overestimate the issue of

representativess Don’t forget minorities Respect for ambiguity

Challenge 4

Enabling inclusion and contributions

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

Competences of the project leader

Abma & Broerse, 2007

TeacherFacilitatorResearcherOrganisatorBuilding bridgesSocratic guideMediator

ReflexiveCreativeOpen mindTolerant for ambiguityFlexibleEmpatic

Establish Collaboration

Promote “learning”

Do Research Enhance communication

Support Patients

Roles

Tasks

Qualities

Conclusions1. 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.

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Thanks for your attention