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Jornadas #PatientInHTA · Isabel Amo

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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

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Jornadas #PatientInHTA · Isabel Amo

  1. 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. 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. 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. 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. 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. 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. 7. When patients come into play?
  8. 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. 9. There is much to do…
  10. 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. 11. Citizen participation levels Question Information Participation Collaboration Pasive participation Active participation
  12. 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. 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. 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. 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. 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. 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. 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. 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. 20. Recommendations Different profiles Proactive Clear and structure methodology Train the participants Provide educational material to the patient Systematic evaluations Amo 2017
  21. 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

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