Presentation in the framework of the International Conference "10th anniversary of the Spanish Network of Health Technology Assessment Agencies. Towads patient and public engagement in HTA" Zaragoza 27-28 April 2017

1. Zaragoza, 27-28 April 2017
PATIENT PARTICIPATION IN
DECISION-MAKING
Isabel Amo
Institut Albert Jovell de Salut Publica – UIC.
Representing Spanish Patient Forum
PUBLIC HEALTH CONFERENCE
10th anniversary of the Spanish Network of Health Technology Assessment (HTA) Agencies:
Insights for collaborative networking
Towards Patient and public engagement in HTA

2. Spanish Patient Forum
When patients come into play?
Patients new roles: making decisions - evaluators.
Patient Reality
When to incorporate patients into projects?
Recommendations
Conclusions
INDEX

3. • Barcelona’s Declaration 2003:
– Patient participation in decision-making:
Information
Decision-
making
Participation
Adaptation (Navarro 2016)
SPANISH PATIENT’S FORUM
Health Technology Assessment

4. • The Spanish Patients Forum was launched
in 2004 with the Barcelona Declaration.
• During these 14 years the SPF has been
evolving in its different activities and work.
• It represents 32 organizations,
More than 1.000 asociations
It represents to more than 10 millones
people
SPANISH PATIENT’S FORUM
Health Technology Assessment

5. Madrid, 9th March 2017
Aupdate of Barcelona Declaration in 2003
Represents 55 patients and volunteers organizations
First National Asociations meeting of patients and
volunteers
J.L. Baquero 2017
SPANISH PATIENT’S FORUM
Health Technology Assessment

6. n=55
1º Encuentro Nacional de Asociaciones de Pacientes y Voluntarios, FEP-2017
Patients organizations and volunteer in the area of Health
MEDIAN
(MD)
1 Demand patient and obligations rights 9
2 Participate in health policy in all levels (empowerment) 9
3 Humanize the relationship with the patient 9
4 Ensure access to full, quality and sustainable Health system 9
5 Ensure equity in care at the national level 9
6 Adapt the health system to the patient’s integral care 9
7 Ensure social and health support till the end of life 9
8 Promote health education and prevention 9
9 Promote I+D+I 9
10
Raise awareness about the role of patient and volunteer
associations
9
J.L. Baquero 2017
SPANISH PATIENT’S FORUM
Health Technology Assessment

7. When patients come into play?

8. 5 Key Questions:
• Do patients participate in the institutions’s governing
bodies?
• Is health care organized around patient agendas?
• Are professionals trained in patient’s communication
techniques and cognitive and emotional care?
• Is health care organized to achieve integrated, global and
coordinated care?
• Do health institutions provide information about their
care activity and the results obtained?
Adaptation (Jovell 2000)

9. There is much to do…

10. Adaptation (Navarro 2016)
Sick population
(Patients)
Individual decisions
General population
(Citizens)
Collective decisions
Patients new roles: making
decisions - evaluators.
It is necessary to differentiate….
Micro level
(Wright-Berryman et al., 2011)
Meso and macro level
(Boote et al., 2010)
(Crawford i Rutter., 2004)

11. Citizen participation levels
Question
Information
Participation
Collaboration
Pasive participation Active participation

12. Patient Reality
Disease’s experience Knowledges
Needs not detected by the health professional
Impact on his/her life’s quality
…
Drugs
Technology
Health policy
…
Father/mother; son/daugther; friend… Architech, driver, factory
worker, cleaner, economist, secretary, lawyer, teacher, cooker.....
Citizen
Evaluation
Interest
Specific knowledge required
Amo 2017

13. When to incorporate patients into projects?
Adapted (Navarro 2016)
In a collective level (meso / macro)
There must be patients in all the committies or projects?
PROJECTS
EVALUATIONS
Recommendations
Necessities
Opinion /
Evaluation
At the begining / in the middle

14. • Waste of time (Mitton et al., 2009).
• Citizens don’t see the benefits (Litva et al., 2009).
• Little influence on final decision (Wait i Nolte, 2006).
• Citizen doesn’t assume his rol in decision-making (Litva, 2009).
Individual
Barriers
• Lack of skills (Rutter et al., 2004).
• Objective not clear (Maxwell et al., 2008).
• Lack of health promotion (Rutter et al., 2004)
• Lack of financial compensation (Maxwell et al., 2008).
Organization
Barriers
• Transfer of power to the citizen. It’s necessary tools to promote
the participation. (Tritter et al., 2006).
• Not systematic. Not protocolized (Forster i Gabe, 2008).
• Lack of participation at different levels of the system (Fudge et
al., 2008).
• Delay of decision making (Rutter et al., 2004).
System
Barriers
Barriers during participation process
Amo 2017

15. Main difficulties of patients to appreciate TECHNOLOGY
applied in Health
✔ Difficulty in understanding
✔ Poor patient participation in the development of health
technology
✔ No include patient’s views
✔ Trust deposited in the doctor.
✔ Scarce information to the population about technological
advances by the developers and Health Systems.
Adaptado J.L. Baquero 2017
SPANISH PATIENT’S FORUM
Health Technology Assessment

16. Benefits of participating
It offers added value that benefits decision-making (Bruni et al., 2008).
Improves the quality of service (Council of Europe 2000).
Improves the perception of the services by the patients (Fudge et al., 2008).
Promotes a better understanding of how decision-making and health policy
design works (Wait i Nolte, 2006).
Savings incorporation people formed (American Medical Association, 2003)
Amo 2017

17. Be part of
Collaborate
with
Ministry in
health
strategy
Minimum
Knowledges
Health
profesional
must be
trained to
work with
citizens
HTA for
patients
Basic needs to assess any type of innovation
Amo 2017

18. TECHNOLOGI from patients perspective
✔ Focused on the the patient’s needs and not just on the
disease
✔ Health is a physical, emotional and social well-being
✔ Personalized treatment
✔ Share the patient's goals to have their commitment and
therapeutic adherence.
✔ Humanization in the application of the technology
Adaptado J.L. Baquero 2017
SPANISH PATIENT’S FORUM
Health Technology Assessment

19. Within European Patient’s Forum, at the
Ministry level, EUPATI in Spain and different
experiences in some autonomous
communities:
– AEMPS IPT participation (Therapeutic Positioning Reports)
– Participate in EUPATI Spain (Patient Representatives, Academic
World and Industry). Objective to work collaboratively to promote
patient education and encourage participation in the national R &
D process of medicines. *****
– Participation in different in surveys on the subject (Institute of
Health Sciences in Aragon-IACS)
– e-Health
– Spanish Network of Health Technology Assessment Agencies
driven by the Spanish Ministry of Health
Experiences
SPANISH PATIENT’S FORUM
Health Technology Assessment

20. Recommendations
Different profiles Proactive
Clear and structure
methodology
Train the
participants
Provide
educational
material to the
patient
Systematic
evaluations
Amo 2017

21. Need to include patients in HTA from the beginning.
Required that it is formed in those minimums. (Patient
feels one more and feel that your participation is useful)
It is necessary to evaluate results and see how the
patient participation brings value.
Assess it is necessary to be at all the evaluations.
Train the professional to know how to work with the
patient as a collegue.
Conclusions
1
2
3
4
5
Amo 2017