European Mechanisms for increasing Patient Empowerment Resources (EMPowER)

Background and Aims

The empowerment of patients is a key element of health quality and there is good evidence that care is more effective when patients are well involved and informed. Effective self-management of chronic conditions also leads to demonstrable benefit. In addition, patient empowerment is important to the effective exercising of patients. rights, such as consent.

Patient empowerment is therefore a widely supported principle. Unfortunately, it has proved difficult to implement and practitioners, health organisations and user groups need information and support to achieve this.

EMPowER will describe and promote patient empowerment activity in Europe. It will map this activity then select a set of tools to promote better engagement including a compendium of good practice.

1. Patient empowerment and engagement activity will be mapped across Europe by a consortium of thirteen agencies representing user groups and other stakeholders concerned with health quality or a specific disease (diabetes or mental health).
2. The mapping will cover 30 states, both EU members, accession states and some other Eastern European countries.
3. Data will be collected on two levels, conventionally by researchers exploiting the agencies. established links with users and other stakeholders in both disease groups, but in mental health in addition user-representatives will be trained to enable them to carry out parallel studies from a user perspective.
4. Comparisons will be made between activity in East and West Europe and between the two disease groups. There is evidence that self-help has developed differently in countries with less well-developed health systems. Users from more developed health systems may well benefit from this experience. Diabetes is traditionally seen as a condition where self-management is more common than in mental health, but it is anticipated the reverse may be true. Cross-fertilization between these geographic areas and disease entities will occur by including an element of cross-representation on working groups.

A set of tools will be selected to promote patient empowerment activity including:

1. General information on effective approaches: Expert groups in both mental health and diabetes will identify effective approaches and tools by consensus and supported by a review of the literature. Approaches will probably include web-based resources, telephone-based information services, user groups and work projects. Participants will include a substantial representation from user-researchers.
2. Specific models, including:
   1. Self-management models with good practice examples
   2. Models of user involvement in policy development e.g. Policy Fora in Eastern Europe.
3. Guidance and standards, including:
   1. Consensus-based standards for the assessment of levels of empowerment in services and patient participation in clinical pathways (both in pathway development & .live-participation.).
   2. Common taxonomy for technical terms.
4. A sustainable compendium (database) on good practice in empowerment.

Wherever possible, data-collection, analysis and recommendations will be user-led, in line with the principle of empowerment. Service users and experts will also agree effective mechanisms to monitor and evaluate patient empowerment in order to demonstrate future improvements objectively.

This project will link with several EU quality projects including Simpatie (www.simpatie.org) and MARQuIS (www.marquis.be) as well as quality projects pursued by OECD and WHO-Europe

Lead Collaborators

European Society for Quality in Healthcare, Centro Ricerca e Formazione (CEREF), The Avedis Donabedian Foundation (FAD), Irish Society for Quality and Safety in Healthcare, Dutch Institute for Quality in Healthcare CBO, Mental Health International Development (MHID), Picker Institute Europe, County of Aarhus, Trimbos Institute, International Diabetes Federation (IDF-Europe), Common Health Market Ltd., European Network of Users and Survivors of Psychiatry (www.enusp.org)

Contact Details

Please contact David Somekh (dsomekh@esqh.net), Paul Cutler (mhidevelopment@yahoo.co.uk) or Adrian Worrall (aworrall@cru.rcpsych.ac.uk) for further information.