The Patient’s &

Consumers

Perspective

Juan García invictus

experience with diabetes

Albert J Jovell, MD, DPH, PhD

Talking about Juan…1. A typical clinical/social case

2. Living in a complex world

3. That needs ans answer and a strategy

4. While makes us discover some

realities & unexpected challenges

The Patient Exist

What happens (1st part)

“65 years old male diagnosed with

type 2 diabetes with high LDL &

high triglycerides”

Juan’s story

)

Juan major therapeutic

goals

Reduce risk of cardiovascular

disease and complications

associated with diabetes

Juan Therapeutic Plan

Metformin

Glitazone

Statin

Fibrates

Diet

POLIMEDICATION AND COMPLEX

INTERVENTIONS

And more complexity…

Aspirin

Exercise

Glucose Self-monitoring

Blood pressure 130/80

Glicosilade Hemoglobin less than 7

Juan needs appointments:

General Practitioner

Endocrinologist

Nurse

Community Pharmacist

Dietist

He should

- Understand his clinical condition

and the risks associated with it

- Understand the treatment plan

-Be compliant

- Take care of himself

Juan lives in a world of

complexity with…

that’s real life!

Increasing diagnostic and therapeutic

tools

Less money for health care

Increasing health needs

A chronic pattern of disease

Few docs and nurses

An empowered patient

He googled (maybe was his daughter)

Diabetes: 62.000.000 (NSB compared with 163.000.000 Cancer references)

Diabetes type 2: 18.200.000

Diabetes treatment: 6.520.000

Metformin: 76.300

Aspirin & diabetes: 3.580.000

Abril 2008

What really happens (2nd part)

1. He has hearing problems

2. He lives alone

3. He has some memory lost

4. He suffers information overload

5. He has too many therapeutic goals to

meet

6. He turns melancholic

My challenges/goals

as Juan doc

• Increase his diabetes literacy

• A good therapeutic adherence

• Better self monitoring

• Side effects monitoring

• Beware with interactions and iatrogenic

events

• Reduce unexpected events and

complications

• (People from NICE want a good QALY)

Hot questions1. Does Juan want empowerment?

2. Has Juan a realistic free choice decision

making scenario?

3. Is Juan well trained to make those

decisions who benefit him the most?

4. Is our health care system honest with

Juan?

5. Is eHealth helping Juan?

That’s Spain folks…1. High prevalence of chronic disease and

comorbidities.

2. Low compliance with medical

prescriptions

3. Lack of good quality information

4. Short duration of medical appointments

5. Low level of health literacy

More that’s Spain folks…6. Aging population

7. A political promise of excellence,

effectiveness and equity (a market for voters)

8. Bureaucratic system

9. Too many governments

10. Lack of coordination among levels of care and

among professionals

11. Slow governments support to patients

movement (with exception of Catalonia)

1. l

Respondiendo al nuevo modelo de

pacienteBIG PATIENT

ORGANIZATION

24 /1041 / 685.276

KNOWLEDGE

GENERATION &

PATIENT

EMPOWERMENT

SPANISH PATIENT FORUMPATIENTS’ UNIVERSITY

The Patients’

University

Project

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COMUNICACIÓN MÉDICO-PACIENTE

TOMA DE DECISIONES

EDUCACÍÓN MÉDICA

DERECHOS DE LOS PACIENTES

INFORMACIÓN TERAPÉUTICA

ACCESIBILIDAD A NUEVOS TRATAMIENTOS

PARTICIPACIÓN EN POLÍTICA SANITARIA

What we try to do

RESEARCH SUPPPORT

INFORMATION EDUCATION

HEALTH LITERACY Focus

Ability to understand

what happens with your

health, what you need, and then take care of your health

(or other people’s health)

35 websites

THE MEDICAL APPOINTMENT TOOLKIT

www.universitatpacients/aula-es1

WE ARE WITH YOU DURING YOUR MEDICAL APPOINTMENT

DURING THE

APPOINTMENT

AFTER THE

APPOINTMENT

WAITING

PREPARING

THE APPOINTMENT

2. RESEARCH

Needs, experiences and opinions

What our patient knows…

How diabetes affects his daily life and what is his experience as a patient

His attitude about risk

His values and preferences (including diet and exercise)

What he understands about this disease called diabetes

How it affects his social and family lifes

RESEARCH

Training programs

at the Patients’ University

PARTICIPANTS SKILLS PROGRAM

Chronic

patients,

relatives and

carers

• Self-management.

• Skills related to a

specific disease or

field

of knowledge.

• Teaching and

communication.

1. Chronic Disease Self

Management Program

(“Tomando control de

su salud”)

2. “Specialist patient”

program

3. “Tutor patient” program

Health

professionals

• Promotion of health

and self-management.

4. “Tutor professional”

program

Volunteers • Accompaniment to

patients and relatives.

5. Tutor Volunteer”

program

Chronic Disease Self Management

Program (“Tomando control de su salud”)

http//patienteducation.stanford.edu

“Specialist Patient” program

Chronic disease

or field of interest

Specific Target Competence

Asthma Use of a inhaler

Diabetes Insuline self-administration

Cardiovascular risk Mesure blood-pressure level

Kidney disease Fistule care

Cancer Management of chemo-therapy

side effects

Arthritis Pain management

Management of patients’

associations

Achieve a communication plan

Patient-physician

relationship

Preparing the medical

appointment

Search of health

information

Quality assessment of a web

reference

Teaching patients in the management of a specific chronic disease, or a

field of interest.

Patient Cancer Navigation Journey

The book for Children

Patient Empowerment(what a beautiful word)(i)

Once the patient has

the information,

should he be

accountable of his

decision?

Has he been

educated to be

accountable and

take care of himself?

The empowered patient(Juan daughter)

Once the patient

get appropriate

knowledge and

training

Is the professional ready to accept an active patient?

Take home thoughts

• Consumer is not the same that patient

• Big gap among European countries

• Major gap between theory and real life,

between wishes and realities

• eHealth still promising

• People trust docs and distrust

politicians

• Making choices needs high leves of

health literacy

MANY THANKSwww.webpacientes.org/fep

www.universidadpacientes.org

www.fbjoseplaporte.org

albert.jovell@uab.cat