T he EMPATHiE tender: EMPOWERING PATIENTS IN THE MANAGEMENT OF CHRONIC DISEASES

1. The EMPATHiE tender: EMPOWERING PATIENTS IN THEMANAGEMENT OF CHRONIC DISEASES David Somekh, EHFF for the EMPATHiE Consortium PSQCWG meeting December 18th 2014

2. Context: Chronic conditions in Europe +80% of people over 65 are affected by a chronic condition + 55% of people over 65 are affected by multiple conditions 70-80% of healthcare budgets is dedicated to chronic care Cardiovascular diseases, cancer, diabetes, obesity, and chronic respiratory diseases represent 77% of the disease burden measured by disability-adjusted life years

3. Background to the bid In early 2013 the European Health Futures Forum (EHFF) took the opportunity to convene a Network of interested parties (currently 22 European stakeholders including patient organisations, other NGOs, Institutes and University departments) to make a successful offer to participate in the EIP-AHA to provide expertise on PE for the action group on integrated care, B3. This group became the Empathie Network. Subsequently a Consortium drawn from members of the Network was awarded the tender to be described, with a kick-off in November 2013 and completion in the latter part of 2014.

4. EMPATHiE Consortium • AvedisDonabedian Research Institute (FAD) - Autonomous University of Barcelona • Dutch Institute for Healthcare Improvement CBO) • European Patients’ Forum (EPF) • Chalmers University of Technology • Masaryk University (MU) • European Network on Patient Empowerment (ENOPE) – Danish Committee for Health Education • Royal College of Psychiatrists (RCPsych) • Standing Committee of European Doctors (CPME) Experts: • Prof Angela Coulter • David Somekh (EHFF) • European Federation of Nurses (EFN) • Research Group. ServicioCanario de Salud. (Spain)

5. Empowering patients in the management of chronic diseases: objectives - • To help understand the concept of Patient Empowerment as a prerequisite to exercising patient rights. The specific objectives are: • To identify best practices for patient empowerment • To identify facilitatorsand barriers to empowering patients • To develop a method to validate transferability of good practices • To develop scenarios of EU future collaboration on this subject Target groups • Patients with chronic cardiovascular diseases (CVD or stroke) • Patients with chronic respiratory diseases (COPD) • Patients with chronic diabetes (type 1 and 2) • Patients with mental health (schizophrenia or chronic depression) • Complex patients (co-morbidity)

6. An empowered patient has control over the management of their conditions in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behaviour and to work in partnership with others where necessary, to achieve optimal well-being. Patient Empowerment – Operational definition Patient Empowerment Involvement Active Support Respect Health Literacy Person-centred care Equip Partnership Self-management Community Shared treatment decision-making

7. Patient Empowerment interventions – Operational definition Imagecredit: http://fmgators.ymcacassclay.org/2013/05/16/reminders-practice-island-park-summer/ Empowerment interventions aim to equip patients (and their informal caregivers whenever appropriate) with the capacity to participate in decisions related to their condition, to create awareness and develop competences of healthcare professionals and improve the preparedness of the healthcare system to tackle this paradigm.

8. Conceptual framework MACRO level MESO level Patient Satisfaction Professional Satisfaction Quality of Life Clinical Outcomes Use of Health Services (Cost) MICRO level OUTCOMES Strategies of PE aimed towards PROFESSIONALS Strategies of PE aimed towards PATIENTS EDUCATION Patient Empowerment SHARED DECISION- MAKING SELF-MANAGEMENT

9. PROJECT PHASE Catalogues of best practices of PE (WP1) Barriers and facilitators of PE (WP2) Develop a method to validate transferability of good practices on PE (WP3) ANALYSIS PHASE TRANSFERABILITY PHASE Scenarios of possible EU collaboration on PE (WP4)

10. WP1 - CATALOGUE OF BEST PRACTICES - METHODOLOGY

11. WP1 - CATALOGUE OF BEST PRACTICES – DESCRIPTIVE RESULTS

12. CATALOGUE OF BEST PRACTICES– LITERATUREREVIEW, DESCRIPTIVE RESULTS(1118 SR) Distribution by condition Selected N= 69 SR; 1728 articles (SRs filtered using AMSTAR score and assessed impact)

13. PROJECT PHASE Catalogues of best practices of PE (WP1) Barriers and facilitators of PE (WP2) Develop a method to validate transferability of good practices on PE (WP3) ANALYSIS PHASE TRANSFERABILITY PHASE Scenarios of possible EU collaboration on PE (WP4)

14. WP2 Methodology – Identification of barriers and facilitators • Exploration of topics - Focus groups • 18 Countries - 170 persons (+50% patients) • Identification 952 important facilitators and barriers • (1/3 facilitators and 2/3 barriers) 19 clustered topics Prioritization – Survey 26 countries - 869 persons (+50% patients) Identification of 5 top clustered topics

15. Main Barriers and Facilitators (I)

16. Main Barriers and Facilitators (II) Main Barriers and Facilitators (II)

17. Top 5 clustered aspects Slight differences in ranking when examined by respondent group or by Region

18. PROJECTPHASE Catalogues of best practices of PE (WP1) Barriers and facilitators of PE (WP2) Develop a method to validate transferability of good practices on PE (WP3) ANALYSIS PHASE TRANSFERABILITY PHASE • Best conditions for transferability of good practices • Context consideration • Methods of transferability Scenarios of possible EU collaboration on PE (WP4)

19. Method for transferability of good practices Findings of WP1 and WP2 linked to literature reviews concerning innovation, adoption and emergence of Good Practices in organizations; especially from social science and improvement science research. “Practice content +Context + Implementation Process  Outcome” Model tested post-hoc with four interventions chosen from the literature, to demonstrate potential practical value. Three CHAFEA approved EU Experts assessed face validity. Transferability model from one setting to another based on Pettigrew

20. Assessment matrix for Good Practices on Patient Empowerment (GPPE)

21. Assessment matrix for Good Practices on Patient Empowerment (GPPE) (continued)

22. PROJECT PHASE Catalogues of best practices of PE (WP1) Barriers and facilitators of PE (WP2) Develop a method to validate transferability of good practices on PE (WP3) ANALYSIS PHASE TRANSFERABILITY PHASE • Stakeholder consultation: workshops, online survey, personal interviews • Participants from 35 organizations Scenarios of possible EU collaboration on PE (WP4)

23. WP4 Methodology - Scenarios of possible EU collaboration on Patient Empowerment • Exploration of possible scenarios • Inputs from WP1 & 2 • Development of initial scenarios Inputs from WP3 Development of feasibility criteria • Explored in 2 workshops with relevant stakeholders Development and prioritization 104 respondents online survey 40 stakeholder interviews Selection and refinement of the 4 final scenarios

24. From the overall consultation process four final scenarios were developed with consideration of 1) the effort needed to start collaborating, 2) effectiveness in achieving patient empowerment, 3) perceived costs, 4) EU added value, 5) benefits and perceived risks and 6) barriers and success factors. The scenarios are: • “The informed patient” • “New professional skills, knowledge and attitudes” • “Self-management supported by technology” • “Transparent quality data for patient choice”

25. Scenarios of future EU collaboration (1)

26. Scenarios of future EU collaboration (2)

27. Main conclusions (1) • Catalogue of good practices: interventions targeting patient empowerment tend to present positive results (when compared to conventional care). Further research is still needed to determine under which specific circumstances (contexts) different intervention types provide better results. • There is an extensive number of systematic reviews of patient empowerment interventions targeting chronic patients and yet the literature related to complex patients and interventions specifically addressed at professionals is still substantially under-developed. • Stronger evaluative work from meso and macro level initiatives is also needed. • The survey, though not based on random selection in each country, allowed identification of consistent stakeholder priorities and the future developments perceived as needed to strengthen patient empowerment. • European collaboration could focus on developing the five prioritized key aspects that arise from the survey. There was no strong distinction between facilitators and barriers since almost every action was described in both senses. Suggested policy agenda areas at different levels include: focus on better education of patients and public, improved education of healthcare professionals in holistic thinking and communication,specific restructuring of healthcare delivery and a central common electronic record accessible by patients as well as professionals.

28. Main conclusions (2) • The method to validate transferability of good practices onPE should also be regarded as an improvement tool, directing attention to factors that may hinder the transferability of a promising Good Practice for Patient Empowerment. Especially, it directs attention to factors that are barriers but are potentially changeable. A protocol is proposed for the further assessment/validation of transferability using Good practice examples derived form the WP1 catalogue, so that the method can be refined for more general use. • Possible scenarios for EU collaboration.Patient empowerment is considered an important area by all stakeholderand all feel they have something to contribute. European collaboration on patient empowerment is seen in a positive light (73% would like to see an EU strategy and action plan). Other outcomes of collaboration highly rated were an improved evidence base, a common repository of best practices and tools, common indicators and comparable data. The formulation of a European strategy and action plan on patient empowerment as a starting point is recommended, given that is what the large majority of stakeholders seem to favour. We would also recommend that some action is taken towards the creation of a common repository of best practices and tools,the development of common indicators in order to achieve comparable data and an improved evidence base on PE. Current initiatives, such as the PaSQ JA, Chrodis JA and the European Innovation Platform on Active and Healthy Ageing provide opportunities for synergies and building on the work that has already been undertaken.

29. Future actions of the EMPATHIE Network Platform of experts in self-care in minor conditions (PiSCE tender) Contribution to Chrodis JA as collaborating partner Continuing participation in Joint Action PASQ (FAD & EPF) Contributing to European Innovation Partnership on Active and Healthy Aging: B3 Action area and Synergies group, A2 Action area etc.

30. THANK YOU FOR YOU ATTENTION BARCELONA C/ Provença, 293, pral. 08037 Barcelona Tel.: +34 932 076 608 MADRID Paseo de la Castellana, 141 (Edificio Cuzco IV) 28046 Madrid Tel.: +34 917 498 046 BOGOTÁ Carrera 7ª 123-24, Of. 503 101100 – Bogotá Tel: +57 1 744 99 76 Contact: fad@fadq.org www.fadq.org Contact: david.somekh@ehff.eu www.ehff.eu