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February 2010

Introduction

The Expert Patient Programme aims to empower patients with thalassaemia across the world so they can take greater control of their disease and participate meaningfully in decision-making concerning their medical and other care. The core component of the Programme is development of the patients’ knowledge to a level where they are able to do this, through provision of quality information and training.

The target audience of this educational initiative consists of patients with thalassaemia in all affected countries, and by extension their parents/families. It will initially start with a “core group” of experienced patients who will be involved, together with the TIF office, in developing a set of standard educational training materials. They will then undergo the learning process themselves in order to be designated as the first expert patients. The core expert patient group’s task will then be to identify other patients and educate them by using the standard educational materials. The initiative will be expanded gradually with the ultimate aim to establish expert patient groups in each country.

Statement of need

A fundamental shift has taken place in recent years in the way in which diseases, particularly chronic diseases, are managed. It is increasingly recognised that the patient should play a key role in the management of such conditions. This is only achievable if patients are capable of taking on the role of equal partner. Only fully informed patients, who know their condition, its holistic care and rights as patients and citizens, can actively participate in and contribute to decisions concerning their own health. Further, the inclusion of the patients’ perspective has become an essential step in efforts to improve healthcare services. Expert patients are capable of contributing to such efforts in a wider context of public health and quality of life/human rights issues, whether these are addressed at national, regional or international level.

In those countries where quality services for thalassaemia have been in place for many years, doctors, nurses and other health professionals often comment that chronic patients understand their disease better than they do. Conversely, in countries where awareness about thalassaemia, prevention and treatment services are lacking – mostly, but not exclusively in developing countries – the patients’ skills, confidence and self-esteem are often low as a result of a lack of knowledge about their disease and its management.  This is either because of a lack of information; poor quality information; and/or the patients’ low (health) literacy skills.

It is important to develop effective services based on successful chronic care models (such as that developed by Wagner et al.), a major component of which is self-management by the patient through acquisition of knowledge by the patient. This is especially pertinent in the management of thalassaemia, where the prevention and early recognition of complications by the patients themselves and their family are crucial for good health outcomes. There is therefore a clear need for more interventions to increase the knowledge, education and self-care resources of patients with thalassaemia.

Several lay-led self-management programmes have been developed over the last twenty years, for example the Chronic Disease Self-Management Programme (CDSMP) developed at Stanford University in the USA, the UK Expert Patients Programme developed with the support of the Department of Health, and a Sickle Cell Disease self-management programme in the USA . Findings from evaluations made for some of these have demonstrated that a low-cost, patient-led self-management programme can significantly improve the health status of patients and reduce health service costs.

Learning objectives

4.1.  General objective

The general objective of this educational initiative is to develop the knowledge of patients with thalassaemia in order to give them the skills, confidence and motivation to take meaningful decisions and play a key role as partner in healthcare decision-making – concerning their own health, but also in a wider context of national health policy decision-making.  

The initiative aims to do this through quality information that is objective, balanced, evidence-based, up-to-date, easily understandable and relevant to patients’ concerns. (See 5.5. below) With the expansion of the project the materials will be translated where necessary, and adapted to take into account geographic location, cultural and language factors.

4.2.  Specific objectives

The specific learning objectives for patients who complete the training include:

• In-depth knowledge about their condition, prognosis, complications, treatment options, research and clinical trials, other care services, psychosocial support
• The necessary skills to effectively self-manage
• The necessary knowledge to evaluate care options and new treatments  
• An understanding of important policy issues, such as patient safety and patients’ rights
• The necessary skills and confidence to develop effective partnerships with doctors and other health professionals
• The necessary skills to cope and manage daily life better: problem-solving, goal-setting, decision-making, using resources effectively, managing pain, fatigue, anger, depression etc.

Proposed faculty and tasks

5.1.  Expert Patient Programme

Faculty
A group of 12 expert patients has been identified and invited to form the core Expert Patients Panel, consisting of 5-6 patients. The selection criteria included long-term experience and knowledge of medical, psychosocial issues and patient advocacy issues; active contribution to educational activities at national and international level; excellent communication skills; interest and ability to commit to the planned activities. The initiative is coordinated by the TIF office through its Executive Director.

Tasks
The core Expert Patients Panel will work in collaboration with the TIF office, and in liaison with UCL and Stanford, to prepare the contents of the Expert Patient educational programme:

• Sets of standard educational materials (written and audiovisual) for educating patients of different ages and literacy levels. The sets will include information on all aspects of the management of thalassaemia, guidance for self-management, and other relevant health issues in a wider social context. Some of these have already been initialised in 2009 as part of the “patient-friendly educational materials” and will be reviewed by the Expert Patient Panel. Further materials will be prepared as necessary.
• An educational course, which will be used to train patients to become expert and qualify them to train others.

The structure of the educational will be based broadly on existing similar courses, such as the CDSMP, adapted to the needs of thalassaemia. The panel will agree on evaluation and impact measurement procedures. The course contents will include:

• Aspects of thalassaemia management, including treatment options and recent scientific developments
• How to evaluate new treatments
• Appropriate exercises for maintaining and improving strength, flexibility and endurance
• Appropriate use of medications
• Communicating effectively with doctors, family and friends
• Techniques to deal with problems such as frustration, fatigue, pain and isolation
• Patient advocacy issues
• European and international policies relevant to the health and quality of life of chronic patients, TIF’s impact and contribution.  
• A methodology for the preparation of the educational materials and course, which will refer to recognised quality principles, such as those recommended by the EU Pharmaceutical Forum and the International Alliance of Patients’ Organizations.
• Official validation will be sought for the materials and the course from an appropriate recognised source.

The first meeting of the Expert Patient Programme will take place on 12 March 2010 in the context of the 2nd Pan-European Conference on Haemoglobinopathies, in Berlin. The first meeting will further define the objectives, methodology, outcomes and evaluation of the initiative as well as its plan of activities for 2010–2012. A second meeting will take place towards the end of 2010 and will be combined with a first intensive course.

Sustainability and expansion
The core Expert Patient Panel will be kept at a manageable size of 5-6 patients, and its task will be to oversee the annul educational activities. In order to rotate the membership of the core Expert Patient Panel, members will be set a limited term, the length of which and the (re-) selection procedure to be defined by the panel and the TIF Board. New members will be invited to join the Panel as considered appropriate.

The core Panel will focus on identifying expert patients in every affected country.
Each patient who completes the training course using the standard educational materials, will obtain a certificate from the Expert Patient Panel. Patients who have attended the course and gained the certificate will arrange training courses in their own countries, with the aim of creating a national expert patient group. New expert patient trainers will be asked to prepare a report at the end of their first year to explain the educational activities they have undertaken and their evaluation. The long-term aim is to form national Expert Patient Panels in as many TIF’s member countries as possible, with 5 members from each country.

It is envisaged that the international training course taught by the core Expert Patient Panel will be held annually, with applications invited through an open procedure.  Participants will be selected according to criteria to be set by the core panel and the TIF Board.

Desired outcomes and evaluation strategy

Assessment will take place through questionnaires and follow-up interviews with patients who have completed the educational courses, to assess the extent to which they perceive the education has impacted their knowledge, self-esteem, confidence and other factors (see objectives above).

Desired outcomes or success factors in the long term include:

• Patients with thalassaemia have better knowledge about their condition, various treatment options, research developments, and wider public health issues.
• Patients feel empowered in their relationship with health care professionals and have higher self-esteem.
• Patients adhere better to the prescribed treatment.
• Patients have better health outcomes – ultimately better survival and quality of life, reflected in more patients finishing secondary and tertiary education, gaining employment, and forming relationships and families of their own.
• Patients are more capable of accessing the available services and navigating the health system.
• Patients are better equipped to participate and actively contribute their skills and knowledge for the benefit of their national thalassaemia associations, but also to the further improvement of national services, and to health-related projects and policies at national, regional (e.g. European) or international level.

These will be assessed through follow-up studies three and five years after the initiation of the programme. A detailed methodology for evaluation will be developed as part of the first phase of the educational initiative

Members of the Expert Patient Panel will support TIF’s global educational programme, e.g. workshops, conferences, publications and networking activities, with their insights and skills. They may also represent TIF when patients’ input is needed at high-level meetings and other activities.