The Expert Patient Programme in Catalonia Country: Spain Partner Institute: University of Barcelona Survey no: (16)2010 Author(s): María González Ortega Health Policy Issues: System Organisation/ Integration Current Process Stages Idea Pilot Policy Paper Legislation Implementation Evaluation Change 1. Abstract Since 2006, the Expert Patient Programme of the Catalan Health Institute promotes self-management through a patient-led training course in order to improve quality of life and illness acceptance of patients living with chronic conditions. Evaluations show that expected outcomes related to patients? increase of knowledge, change of habits and satisfaction where achieved, but the impact of this program on the use of health services still remains unknown. 2. Purpose of health policy or idea The Expert Patient Programme (EPP) of the Catalan Health Institute was launched in 2006 with the following objectives: 1. Promoting patients' self-management to take correct control of their chronic conditions. 2. Improving their quality of life, knowledge, habits and lifestyle according to their chronic disease. 3. Achieving patients' involvement and satisfaction. 4. Improving treatment performance. 5. Decreasing the number of visits to primary care and emergency services and hospital admissions related to the disease. The EPP is developed by Primary Care Teams in Catalonia within the framework of a Disease Management Programme. The basis of the programme is a training course consisting of nine sessions, which take place within a period of two and a half months, and that teaches people how to manage their conditions by using decision making and problem solving techniques. The main feature of this programme is that one patient carries out the leadership of the group (the expert patient, EP). The members of a multidisciplinary team (a family doctor and a nurse or a social worker) select and train the EP, set up the patient groups, act as observers during the sessions or as leaders if it is necessary and, finally, include the information for the subsequent evaluation. The expected outcomes are: Improving patients' quality of life and control of their chronic conditions through this training course. Increasing the efficacy of health services by means of avoiding unnecessary visits related to long-term illnesses. Increasing the number of chronic conditions included in the EPP. - 1 -
The main incentives are indirect: reducing costs derived from the improved management of chronic conditions, optimizing the use of resources and moving from a paternalistic approach of health care delivery to a patient-centred one. Main objectives The main objectives are: promoting patients' self-management, improving their quality of life, knowledge, habits and lifestyle according to their chronic disease, achieving patients' involvement and satisfaction, improving treatment performance, and decreasing the number of visits to health services related to the disease. Type of incentives There are both, financial and non-financial incentives, behind this project. Non-financial ones are related to improving patients' quality of life trough self-management promotion, and financial ones to the decrease in the number of visits to health services. Groups affected Patients with heart failure, anticoagulant therapy, and COPD, primary care health personnel of the Catalan Health Institute, other community services 3. Characteristics of this policy Degree of Innovation traditional innovative Degree of Controversy consensual highly controversial Structural or Systemic Impact marginal fundamental Public Visibility very low very high Transferability strongly system-dependent system-neutral The EPP developed by the Catalan Health Institute, as commented before, is based on US and UK experiences (it isn't an innovative contribution), is boosted and developed by Primary Care teams without the contribution of hospital specialists and it doesn't entail extra economic investment for the regional government. This programme can be easily transferred to other countries/regions/etc., because its implementation can be carried out without great changes in the current system. 4. Political and economic background - 2 -
In Spain, every region has full competences in the health sector. This fact explains the uneven implementation of the EPP in Spain. In Catalonia, the EPP is an initiative of the Catalan Health Institute, the largest public health services provider, who provides 75% of the Catalan population with primary care services. The programme was carried out within the framework of a Disease Management pilot programme developed by the Catalan Health Institute with the support of the experiences from other countries. Neither planning nor implementation involve any political intervention. 5. Purpose and process analysis Idea Pilot Policy Paper Legislation Implementation Evaluation Change Origins of health policy idea Since the second half of the 20th century, the increase of life expectancy in developed countries has led to a rise in the number of people living with long-term conditions. In order to face this situation, user-led self-management programmes have been carried out over the last twenty years. The main international authority in this field is Professor Kate Lorig of Stanford University (California, USA) with the Chronic Disease Self-Management Programme (CDSMP), developed at Stanford. In 2002, the NHS launched the Expert Patient Programme in the UK. Afterwards, a national Expert Patients Programme Community Interest Company (EPP CIC), a form of social enterprise, was launched in April 2007 and provides free courses. In Spain, with the same basis, the EPP was launched by Primary Care teams in Barcelona (Catalonia), being subsequently extended to other territories of Catalonia and carried out in other Spanish autonomous regions. Initiators of idea/main actors Government Providers: Among the personnel of the Catalan Health Institute the degree of motivation with respect to the EPP is heterogeneous. Payers: The Catalan Health Service covers 100% of the Catalan population's health care. Patients, Consumers Approach of idea The approach of the idea is described as: amended: The EPP of the Catalan Health Institute has a common basis with those developed at Stanford University in US and by the National Health Service in the UK. Stakeholder positions Primary care providers and patients themselves are the main boosters in the implementation of the EPP. Actors and positions Description of actors and their positions Government Regional Health Ministry very supportive strongly opposed Providers Catalan Health Institute very supportive strongly opposed - 3 -
Payers Catalan Health Service very supportive strongly opposed Patients, Consumers Patients very supportive strongly opposed Influences in policy making and legislation The implementation of this project doesn't entail any legal change. Legislative outcome Actors and influence Description of actors and their influence Government Regional Health Ministry very strong none Providers Catalan Health Institute very strong none Payers Catalan Health Service very strong none Patients, Consumers Patients very strong none Positions and Influences at a glance - 4 -
Adoption and implementation Primary care providers and patients see this programme as a new approach for the management of chronic conditions has a great impact on this population's quality of life. Monitoring and evaluation The evaluation process consists of two parts. The first part is carried out both during the course of and at the end of each training session and the second one takes place 6 and 12 months after the end of the course. In both parts, the evaluation is qualitative and quantitative measuring patients' variables on the one hand (knowledge, habits and lifestyle changes, self-care degree and satisfaction) and utilisation of health services (related to visits to primary and after hours care services, and hospital admissions) on the other. Review mechanisms Mid-term review or evaluation Results of evaluation Up to now, 31 groups of EPP have been developed by 18 Primary Care teams of the Catalan Health Institute focusing on three chronic conditions: Heart Failure, Chronic Obstructive Pulmonary Disease and Anticoagulant Therapy, with a total of 287 participants (24 of them as expert patients). The programme has been extended to other territories as well as Barcelona city, including Metropolitan South, Girona and Central Catalonia. Available data from the analysis of the Heart Failure groups in the year 2008 showed an increase of knowledge of 7.06% and an improvement of habits and lifestyle of 9.3%. These percentages reached 11.61% and 5.8% after 6 months and, after 12 months, 11.72% and 6.7%, respectively. Related to self-management (assessed by the European Heart Failure Self-care Behaviour scale), the following results were obtained: a decrease in the degree of dependency of 5.86% at the end of the intervention; 5.71% after 6 months and 5.59% 12 moths later. With regard to quality of life (measured through the "Minnesota Living With Heart Failure" Quality of Life Questionnaire), an improvement was achieved of 6.97% at the end of the courses, and of 7.76% and 8.82%, 6 and 12 months later, respectively. Differences observed both in self management and quality of live, after 6 and 12 months of finalizing the intervention, where statistically significant. 6. Expected outcome The available results of the Catalan experience show an improvement in patients' quality of life and degree of selfcare after the training course. Another achievement is that the EPP was extended to cover additional chronic conditions and territories. But it is still too early to know the impact of the implementation of the EPP on resource consumption or use of health services. Quality of Health Care Services marginal fundamental Level of Equity system less equitable system more equitable Cost Efficiency very low very high The EPP, as shown by the results of the evaluations, has a great impact on patients' quality of life and selfmanagement of their chronic conditions and reduces costs related to health care delivery. This programme is being provided to an increasing range of the population as more territories are being included in it, but geographic - 5 -
differences are still observed. 7. References Sources of Information - González Mestre A, Grifell Martín E. Programa Paciente Experto Institut Català de la Salut. AMF. 2009;5(4):243-245. - González Mestre A, Fabrellas Padrès N, Agramunt Perelló M, Rodríguez Pérez E, Grifell Martín E. De paciente pasivo a paciente activo. Programa Paciente Experto del Institut Català de la Salut. Revista de Innovación Sanitaria y Atención Integrada. 2008. Vol 1, nº1. Available at: http://pub.bsalut.net/risai/vol1/iss1/3s - Jovel AJ, Navarro Rubio MD, Fernández Maldonado L, Blancafort S. Nuevo rol del paciente en el sistema sanitario. Aten Primaria.2006;38(3):234-7. - The Expert Patient: A new approach to chronic disease management for the 21st century. Department of Health (DH). Available at: www.dh.gov.uk/en/index.htm Author/s and/or contributors to this survey María González Ortega Suggested citation for this online article María González Ortega. "The Expert Patient Programme in Catalonia". Health Policy Monitor, October 2010.. Available at http://www.hpm.org/survey/es/a16/3-6 -