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

Spanish Patient Forum

When patients come into play?

Patients new roles: making decisions - evaluators.

Patient Reality

When to incorporate patients into projects?

Recommendations

Conclusions

INDE

X

• Barcelona’s Declaration 2003: – Patient participation in decision-making:

Information

Decision-making

Participation

Adaptation (Navarro 2016)

SPANISH PATIENT’S FORUM Health Technology Assessment

• 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

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

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

When patients come into play?

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)

There is much to do…

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)

Citizen participation levels

Question

Information

Participation

Collaboration

Pasive participation Active participation

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

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

• 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

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

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

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

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

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

Recommendations

Different profiles Proactive Clear and structure methodology

Train the participants

Provide educational

material to the patient

Systematic evaluations

Amo 2017

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