• Why is a project like VALUE+ needed?• What type of projects are you assessing?• What do you expect to achieve?• What deliverables will be the result of your project?• What is the role of the partners in the project?
• What is meant by meaningful patients’ involvement in projects? • Why is it important to involve patients and patients’ organisations in health-related projects?• To what extent are patients involved in Value+?
• How does VALUE+ fit within the policy approach on patients’ rights the European Commission has been promoting lately?• Why do you address gender rather than other factors that could equally affect patient involvement in projects?• What methodology is the project using to assess the level of patients’ involvement in projects?
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Why is a project like VALUE+ needed?It is now widely recognised that patients’ involvement in health policy processes is crucial and should be given a high priority. Several projects and initiatives supported by the European Community programmes have involved patients and patients’ organisations and included, to varying degrees of success, their diverse experiences and knowledge.
However, there is no clear overall picture to date on patient’s involvement and input in health-related projects supported by the European Commission. There is therefore a need at EU level to analyse the current situation and to identify the strengths, weaknesses, opportunities and threats of the involvement of patients and patients’ organisations.
The VALUE+ project offers a unique and timely opportunity to map and analyse the extent of current patient involvement in EU health-related projects, to reaffirm the political will and commitment to patient involvement, and to develop some resources to help in achieving greater patient involvement in the future in practical terms.
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What type of projects are you assessing?VALUE+ is looking at health-related projects funded by the European Commission in the period 1998-2008. Due to the mandate of the European Patients’ Forum, the project focuses on European health-related projects associated to patients with chronic diseases and their diagnosis and treatment. We also included some projects related to social aspects of the patients’ lives when these were carried out by patients’ organisations. From there comes the definition “health-related”.
The funding programmes we have researched are those of the Directorate General (DG) for Health and Consumers, DG Research, DG Information Society and Media and the Structural Funds. In addition to European projects we decided to look at some national projects to see similarities and differences. This element could be introduced thanks to the national umbrella partner organisations from Bulgaria and Lithuania who researched projects in their countries.
What do you expect to achieve?The project is expected to provide, for the first time ever, a comprehensive overview and analysis of current practice and trends regarding patient involvement in EU supported health-related projects. In the end we want to raise awareness about the added-value of involving patients and patients’ organisations in projects, to increase the capacity of patients’ organisations to get involved in projects as equal partners, and to apply for and manage EU-supported projects. We will do this through three of the project’s main outcomes: the Policy Recommendations for policy makers, the Handbook for project leaders and promoters and the Resource Kit for patients organisations.
Through the project’s information tools, we aim at increasing awareness about patients’ rights and we aim to contribute to a new culture where patients are respected partners at all levels of health-related care and policy.
What deliverables will be the result of your project?There will a number of outputs as a result of the project. They cover a wide range of materials that can be of help to patients, patients’ organisations, and to policy-makers throughout the European Union:• VALUE+ dedicated web page and logo• Database of health-related projects with patient involvement• Report summarizing the findings on current practice and trends regarding patient involvement in EU health-related projects• 6-8 show case examples of patients’ involvement and an analysis of the critical success factors• Policy Recommendations• Handbook for project leaders• Resource Kit for patients organisations• Information and dissemination event in Vilnius (Lithuania) to test the initial project outcomes and tailor them to patients’ needs• Information and dissemination event in Sofia (Bulgaria) to launch VALUE+ Resource Kit in Bulgarian and VALUE+ Handbook and Policy Recommendations• VALUE + flagship Conference under the Swedish EU Presidency in 2009
What is the role of the partners in the project?All associate partners and some collaborating ones in the Value+ Consortium are represented in the Steering Group. This Group is in charge of giving guidance and insight in the implementation of the project under the lead of the European Patients’ Forum. In addition to being involved in the decision-making, partners provide input in varying degrees into all the project work packages.
What is meant by meaningful patients’ involvement in projects? There is a very diverse understanding of patient involvement among the different actors involved in public health. Moreover, it becomes more complicated when we talk about “meaningful” involvement; which leaves space for further interpretations.
VALUE+ is investigating this diversity at project level by acknowledging that there is not one single model of patient involvement. With this premise in mind, VALUE+ recognises - in line with well-established “models of participation” - that there are certain elements that distinguish meaningful involvement from tokenism, information or consultation.
VALUE+ took inspiration from these models to define a working framework for the project. According to this framework, patients and/or patients’ organisations are meaningfully involved when they:• Take part in decision-making and policy-making as equals • Are valued and acknowledged for their expertise and unique perspective• Have access to the resources they need to be meaningfully involved; e.g. funds; information; training; ad hoc arrangements• Are involved in management or coordinating bodies in the context of projects
The highest form of involvement is when actions, projects, activities are initiated and managed by patients and/or patients’ organisations.
We expect that the project outcomes will help us in refining and redefining this framework.
Why is it important to involve patients and patients’ organisations in health-related projects?Patients and patients’ organisations reflect patients’ unique experience and knowledge of their diseases and they voice the collective interests of patients. With patient input, projects and policies are more likely to respond to their vital needs.
Making decisions on health care and treatments and developing medical technology or drugs without taking into account the preferences and needs of patients is both costly and ineffective. Therefore patients need to be involved in a formal way in European and national health-related projects and policies.
To what extent are patients involved in Value+?VALUE+ is led by the European Patients’ Forum (EPF), the umbrella organisation of pan-European patient organisations active in the field of European public health and health advocacy. EPF currently represents 37 patients’ organisations; these are chronic disease specific patient organisations operating at European Union level or national coalitions of patients organisations.
The majority of partners in VALUE+ are patients’ organizations where patients’ interests are represented directly by patients themselves or by their advocates. The project Consortium is completed by one research and consulting firm. In the project Steering Group two representatives are patients themselves as well as being patients’ advocates.
How does VALUE+ fit within the policy approach on patients’ rights the European Commission has been promoting lately?The project is strategically highly relevant, given the backdrop of the EU Health Strategy 2008-2013, where the policy thrust includes health mainstreaming and patient empowerment. The processes and deliverables of the VALUE+ project contribute in a measurable way to this by promoting patient involvement in both policy and practice in health initiatives led by non-health specific Directorates General, and national government departments.
This approach is in line with the Healthy Democracy process initiated by the Directorate General for Health and Consumers, with its emphasis on connecting citizens and stakeholders.
Why do you address gender rather than other factors that could equally affect patient involvement in projects?Gender, ethnicity, economic situation, religion and sexual orientation are among a number of factors that can affect the health status of patients and their involvement in health care decision-making.
VALUE+ decided to focus particularly on gender for various reasons: Gender is a particularly important determinant of everyone’s health status (1) and is therefore historically an official criterion for consideration in many European Commission funding programmes; some of the project partners have expertise in the analysis of the impact of gender on health; the analysis of other factors could still form the basis of future EU funded projects.
We expect however that those other elements could emerge amongst the challenges to patient’s involvement identified by the project.
(1) Because of the different roles women and men play in society, they are often vulnerable to different diseases. Differences in women’s and men’s roles and responsibilities in society, and gender inequities in access to resources, information and power are reflected in women’s and men’s * vulnerability to illness* health status* access to preventative and curative measures* burdens of ill-health* quality of care
What methodology is the project using to assess the level of patients’ involvement in projects?We used different means to assess the involvement of patients in the health-related projects funded by the European Commission. We first selected the projects from a number of funding programmes on the basis of criteria agreed by the VALUE+ Steering Group. The projects selected were then contacted through a questionnaire addressed to the project coordinator and, in the case of projects involving patients, to one patient or patients’ representative.
To explore further certain aspects of the information collected, we will run focus groups with patients. We are also going to conduct interviews with some of the projects with the aim of defining showcase examples of patient involvement.
Another aspect of our assessment will be a close cooperation between VALUE+ and a number of projects that are currently running throughout Europe. The fact that these projects are still in their implementation phase will give us the opportunity to observe how patients are involved throughout the projects’ lifecycle and to support the projects if they face challenges with regard to patient involvement.
Is VALUE+ presenting at any public events, and where can I hear more about VALUE+’s work? We take the opportunity to talk about VALUE+ at the events we attend but we are not in the position to provide a comprehensive list in advance. Within VALUE+ we will hold three events in Lithuania, Bulgaria and Sweden. You should look at the details in the “Events” section to see whether you or your organisation are eligible to participate.