Transcript Document
The patient’s perspective A look at Europe and patient involvement in the HTA process
Liuska Sanna European Patients’ Forum IPPOSI Information Day on Health Technology Assessment Dublin, 5 April 2011 www.eu-patient.eu
European Patient Forum (EPF)
Umbrella body of 47 European disease specific patients organisations and national coalitions of patient organisations 150 million EU patients with chronic conditions Vision: high quality, patient-centred equitable healthcare across the EU Areas of work: • • • • • • • Patient Safety & Quality of Care Information to Patients - Health Literacy Patients’ Mobility eHealth and Telehealth Health Research Health Technology Assessment Pharmaceutical Package
Background – EPF Value+ Project
Meaningful Patient Involvement : EPF project Value+ “Promoting patients’ involvement in EU supported health-related projects” Meaningful Patient Involvement means that patients take an active role in activities or decisions that will have consequences for the patient community, because of their specific knowledge and relevant experience as patients. The involvement must be planned, appropriately resourced, carried out, and evaluated, according to the values and purposes of: • The participating patients or patient organisations • Other participating organisations and funding bodies • The quality of their experiences during the involvement activity.
Value+ Findings
Benefits of patient involvement:
Addressing the right issues/Better knowledge - Validating good practices - Broader/different perspective - Achieving objectives better results – legitimation of results - Empowerment of patients - Being a community/patient voice ensuring needs are understood
Challenges:
- Lack of legislative and/or policy framework - Lack of/Poor culture and tradition - No methodology - Attitudes and perceptions - Resources & Capacity - Communication
Background – EPF HTA Seminar 2010
Purpose : to enable patient leaders across different parts of Europe to learn more about the science, methodologies, processes and policies behind HTA, and share ideas on how they can get involved in a constructive, meaningful way as patient representatives Recommendations:
Procedures and methodology for patient involvement:
Developing transparent HTA procedures including clear frameworks for integrating patients’ input Develop specific methodologies to better involve the individual patients and patient organisations Need for a mechanism to exchange HTA specific experiences among patients and patient groups
Background – EPF HTA Seminar 2010
Building Capacity
Develop training courses for HTA agencies and patient organisations (the why and the how of patient involvement) HTA agencies need to develop tools to better value qualitative research which is most often at the basis of patients’ evidence versus quantitative research Concrete steps and resources to bridge the knowledge and language gap between HTA experts and patients is needed
HTA Approach/Philosophy
Transparency in decision-making is a must Shift away from mere cost-effective considerations in HTA to include real patients’ needs and patient’s self-reported perceptions of a new drug or technology Appeal rights for patients/patient organisations Indicators need to be improved and/or developed and integrated into HTA methodologies in order to capture effectively the social, ethical, and quality of life aspects relevant to patients
EPF Survey ‘Patient involvement in HTA in Europe’
Purpose : To identify the current situation, good practices in place and the challenges of patient involvement in HTA in European countries.
To contribute this knowledge to the process of informing and building the capacity of patients’ organisations, HTA agencies and HTA appraisal committees and decision-makers in Europe, by producing a toolkit (manual, guide or other format).
Targets of survey HTA agencies Decision-makers Patient organisations European focus Scope of patient involvement: Involvement at organisational level: 1. Patients’ organisations through their representatives Involvement at individual level: 2. Lay patients 3. Informal carers (relatives and friends )
1st Phase – HTA agencies
Responses from 40 out of 50 agencies : EU-15: Austria, Belgium, Denmark, Finland, France, Germany, Greece, Ireland, Italy, Netherlands, Spain, Sweden and United Kingdom; EU-12: Czech Republic, Estonia, Hungary, Latvia, Lithuania, Malta, Poland and Slovenia; EU candidate countries: Croatia; EFTA countries: Norway.
18/40 agencies have some form of patient involvement
(longer tradition in EU 15 countries, 5-10 years)
Who brings the patient perspective?
Main interlocutors are patient organisations – majority of agencies indicated cooperation with average of 3 organisations, most operating at national level
Gathering patients' perspectives in HTA
6 Informal carers Lay patients Patient representatives of patients' organisations 10 17
Reasons behind involvement
Reasons for patient involvement in HTA
Own agency initiative Observation of other agencies Demand from patients' organisations Suggested by HTA networks Other Political Interest Academic interest 0 2 4 6 8 10 12 14
Type of involvement
20 15 10 5 0
Current type & level of patient involvement in different phases of HTA
Not relevant Strong involvement Moderate involvement Don't know Low involvement No involvement
Competencies required for involvement
Impact of patient involvement
Good practices
Other suggested good practices
Public involvement unit within the agency /dedicated staff A formal patient, carer and public involvement policy Offer payment for lay involvement Set up an advisory committee of lay people including patients Organise HTA events specially related to patient participation
Challenges
Challenges for patient involvement in HTA
45 40 35 30 25 20 15 10 5 0 Not relevant Strongly agree Agree Don't know Disagree Strongly disagree
Conclusions
Diversity across countries: not surprising Range of patient perspective: needs to be broadened Integrating the patient perspective: crucial for sustainable patient involvement Support for patient involvement: two clear needs – a) methodology and b) policy framework HTA competencies: capacity building needed for patient organisations but……training also needed for HTA agencies Need to assess the impact of patient involvement in HTA Closing the gap between ideal and real conditions