Engaging patients in healthcare and health policy: what can and should we try to achieve? Tinne Vandensande The Hague – 12/04/2013

Findings re the landscape of patient participation in Belgium 400 large and small patients' associations, ranging from self-help to interest groups Negative frame: heterogeneity leads to fragmentation of the patients’ voice Positive frame: diversity of the landscape is enriching Policy participation is a catch-all term, making it important to clarify the purpose of participation Participation cannot be imposed; it is an opportunity that is created Quality <> quantity: benefits have to be weighed up against costs and drawbacks Limited capacity for organisational change among care providers

Characteristics Legal status Mostly non-profit associations or foundations Self-help groups or, more frequently, de facto associations Board members’ profile All board members are patients or involved relatives (+50%) More than half of board members are not patients or relatives (+20%) Involvement of volunteers On average, 17 days per volunteer per year (sample of 4,000 volunteers) Sources of funding Most income stems from private donations and fundraising activities Government subsidies are relatively limited Projects are underfinanced

Characteristics Typology based on budget and staff (extrapolation) 40% of associations operate on a budget under €5,000 48% operate on a budget of between €5,000 and €50,000 (8% have staff) 8 to 10% have a budget in excess of €50,000. This group controls 89% of the budget at the disposal of Belgian patients' associations and employs staff Age and future prospects (FRB sample) The oldest association dates back to 1934; 3 associations were set up in 2008 Marked increase since 1990 Disease-related action groups Area of activity (FRB sample) 28% Belgium 47% Flemish Community 23% Walloon Region/French-Speaking Community 2% Brussels-Capital Region

: mapping and a multi-stakeholder dialogue Contextual factors that stimulate or hinder the development of a more participatory model in Belgium The financial situation of patients' associations in Belgium A ‘mandate’ to keep a dialogue going, support existing practices and come up with suggestions for further developing patient participation KBF and patient participation

: inspiring and creating leverage Capacity-building: develop and expand the training provided to patients' associations (Trefpunt Zelfhulp and Ligue des Usagers des Services de Santé) Support new participatory projects and evaluate current practices Draw up a framework for optimising patient participation together with the respective governments and patients’ platforms KBF and patient participation

Contribution by the King Baudouin Foundation 7

Situation in 2013 regarding patient participation The importance of patient participation is acknowledged by all stakeholders: “A wealth of experience and know-how that can be of use to us all” The number of initiatives is rising and experience is steadily being acquired A great deal can still be done to create a more participatory culture in the healthcare sector Sooner or later patient participation will have to become more formalised or more closely regulated

Options regarding new practices Five fields of activity and 20 options for boosting patient participation in Belgium I.Develop a participatory culture II.Get citizens involved III.Foster participation in healthcare facilities and networks IV.Involve patients' associations in operational policy decisions V.Involve patients' associations in strategic policy decisions

Options regarding new practices Activity field 1: Develop a participatory culture 1.Make patients aware of their role in the health system 2.Develop training courses and coaching centred around participation 3.Foster cooperation between patients' associations and encourage the development of knowledge networks 4.Develop an operational pool of experts by experience available in each region on which care networks and institutions can rely 5.Develop synergies between patients' associations and other stakeholders

Options regarding new practices Activity field 2: Get citizens involved 1. Citizens’ Council 2. Citizens conferences on health-related issues 3. Temporary user groups

Options regarding new practices Activity field 3: Foster participation in healthcare facilities and networks 1. Promote quality care in hospitals 2. Encourage client councils and users’ committees 3. Encourage ethics committees to include patients amongst their members 4. Develop patient participation within healthcare networks

Options regarding new practices Activity field 4: Involve patients' associations in operational policy decisions 1.Optimise participation by patients’ representatives (e.g. at consensus meetings) within the Belgian National Institute for Health and Disability Insurance (NIHDI) 2.Involve patients' associations more closely in care programmes 3.Guarantee a formal obligation to consult patients' associations 4.Help to set the research agenda 5.Promote high-quality patient participation

Options regarding new practices Activity field 5: Involve patients' associations in strategic policy decisions 1.Recognise and fund the basic operation of patients' associations as a starting point for strategic decisions 2.Recognise patients' associations as legitimate negotiating partners 3.Assign patients' associations a public information role: to implement and coordinate public information on healthcare 4.Participate in an observational capacity

Possibilities for recognition and funding 3 forms of recognition Unofficial ‘de facto’ recognition Recognition by an organisation Structural recognition by the government

Possibilities for recognition and funding Sources of funding – Public subsidies – Private funding by individuals: membership fees, donations, revenue from fundraising activities – Private funding by companies: direct sponsoring – Funding by organisations dedicated to patient participation – Cross-funding or mixed funding Forms of funding – Structural/direct – Structural/indirect – Per project/direct – Per project/indirect – Funding for services rendered

Positioning of patients' associations and their platforms Official recognition Unofficial recognition Ample € No € Platforms Associations

What form could recognition take? Official recognition by the government seems like a legitimate, valid, scenario. An alternative would be to monitor and underpin the ‘bottom-up’ approach, taking ‘partners’, rather than ‘central recognition’, as a starting point. Bodies and institutions convinced of the value of patient participation would sign up for a programme and also be responsible for recognition (by their own organisation) and for funding its operational activities.

What form could funding take? A form of top-down funding using taxpayers’ money is also an option, provided that its impact can be demonstrated in the form of (social and economic) values At least two sources of funding are underused and can thus be exploited from the patient participation viewpoint: industry and sickness funds Individual bodies or institutions that benefit from patient participation An alternative would be to channel various forms of funding through a neutral fund

What are the preconditions? Investment in capacity building Investment in communication: to bring about the necessary change in mentality or spread examples of best practices A decent blend of bottom-up and top-down A combination of different types of funding The difference in value added of participation by a member of the public, an individual user and/or patient, an association or a platform

What can the authorities do? 1.Stimulate practical experience (bottom-up), e.g. in the context of quality management and assessments of healthcare facilities 2.Encourage patient participation in government-internal consultation structures/advisory councils/working groups 3.Support capacity building of patients’ associations 4.Encourage and evaluate exchanges of knowledge 5.Sooner or later: formalise and/or regulate participation

Give it time A learning process Confidence of other actors, self-confidence of patients’ representatives Gain experience and learn