Patient’s Choices in Practice – Results from Listening to Patients in Spain. Jovell A. eHealth week 2010 (Barcelona: CCIB Convention Centre; 2010)

1. The Patient’s &
Consumers
Perspective
Juan García invictus
experience with diabetes
Albert J Jovell, MD, DPH, PhD

2. 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

3. What happens (1st part)
“65 years old male diagnosed with
type 2 diabetes with high LDL &
high triglycerides”
Juan’s story
)

4. Juan major therapeutic
goals
Reduce risk of cardiovascular
disease and complications
associated with diabetes

5. Juan Therapeutic Plan
Metformin
Glitazone
Statin
Fibrates
Diet
POLIMEDICATION AND COMPLEX
INTERVENTIONS

6. And more complexity…
Aspirin
Exercise
Glucose Self-monitoring
Blood pressure 130/80
Glicosilade Hemoglobin less than 7

7. Juan needs appointments:
General Practitioner
Endocrinologist
Nurse
Community Pharmacist
Dietist

8. He should
- Understand his clinical condition
and the risks associated with it
- Understand the treatment plan
-Be compliant
- Take care of himself

9. 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

10. 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

11. 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

12. 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)

13. Hot questions
1. 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?

14. 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

15. 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

16. Respondiendo al nuevo modelo de
paciente
BIG PATIENT KNOWLEDGE
ORGANIZATION GENERATION &
PATIENT
24 /1041 / 685.276
EMPOWERMENT
SPANISH PATIENT FORUM
PATIENTS’ UNIVERSITY

17. The Patients’
University
Project

18. What we try to do
PARTICIPACIÓN EN POLÍTICA SANITARIA
ACCESIBILIDAD A NUEVOS TRATAMIENTOS
E
N
F. INFORMATIONDE DECISIONES
TOMA EDUCATION
R S
R E C E A
E N A S L
U D F. REDUCACÍÓN MÉDICA
P A P U
M E R D D I L A D
Á P E I I R Z R
DERECHOS DE LOS PACIENTES
T R N O C A A H K M
I E A L A B T E I E D
C S T L O N A E O I N N O
INFORMACIÓN TERAPÉUTICA
A
S
I
Ó
RESEARCH
D E
S
G
Í
C
E
S
M
T
E
SUPPPORT
R
I
M
E
S T
A
L
A O O
N H COMUNICACIÓN A
A R MÉDICO-PACIENTE
S O R N L R

19. 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)

20. 35 websites

21. THE MEDICAL APPOINTMENT TOOLKIT
www.universitatpacients/aula-es1
PREPARING
THE APPOINTMENT
WAITING
DURING THE
APPOINTMENT
AFTER THE
APPOINTMENT
WE ARE WITH YOU DURING YOUR MEDICAL APPOINTMENT

22. 2. RESEARCH
Needs, experiences and opinions

23. 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

24. RESEARCH

25. Training programs
at the Patients’ University
PARTICIPANTS SKILLS PROGRAM
Chronic • Self-management. 1. Chronic Disease Self
patients, • Skills related to a Management Program
relatives and specific disease or (“Tomando control de
carers field su salud”)
of knowledge. 2. “Specialist patient”
• Teaching and program
communication. 3. “Tutor patient” program
Health • Promotion of health 4. “Tutor professional”
professionals and self-management. program
Volunteers • Accompaniment to 5. Tutor Volunteer”
patients and relatives. program

26. Chronic Disease Self Management
Program (“Tomando control de su salud”)
http//patienteducation.stanford.edu

27. “Specialist Patient” program
Teaching patients in the management of a specific chronic disease, or a
field of interest.
Chronic disease Specific Target Competence
or field of interest
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’ Achieve a communication plan
associations
Patient-physician Preparing the medical
relationship appointment
Search of health Quality assessment of a web
information reference

28. Patient Cancer
Navigation Journey

29. The book for Children

30. Patient Empowerment
(what a beautiful word)(i)
Once the patient has Has he been
the information, educated to be
should he be accountable and
accountable of his take care of himself?
decision?

31. The empowered patient
(Juan daughter)
Is the
Once the patient professional
get appropriate ready to accept
an active
knowledge and
patient?
training

32. 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

33. MANY THANKS
www.webpacientes.org/fep
www.universidadpacientes.org
www.fbjoseplaporte.org
albert.jovell@uab.cat