"…little has been done to prepare patients for long-term management of their diseases. They face many challenges in coping with discomfort and disability and carrying out treatment programmes on a regular basis. They need to modify behaviour to minimise undesirable outcomes, adjusting their social and work lives to accommodate their symptoms and functional limitations and deal with the emotional consequences. For their care to be effective, they must become adept at interpreting and reporting symptoms, judging the trends and tempo of their illness and participating with health professionals in management decisions."
(Lorig K, et al. Medical Care 1999; 37(1): 5-14)
The establishment of an Expert Patients’ programme constitutes a major component of TIF’s project “Reach the Patient” initiated in 2007 with the aim to extend quality information to patients with thalassaemia across the world, on their disease, its treatment and other care. The objective is to enable them to take valuable, meaningful and timely decisions concerning their health and quality of life. Only fully informed patients who know their condition and its holistic care and rights as patients and citizens can actively participate and contribute constructively to health improvements that are both disease specific but also related to a wider context of public health and quality of life issues whether happening at the national, European or international level.
This training programme is one of the most important and ambitious projects that TIF has ever undertaken, aiming to empower patients to take meaningful and timely decisions about issues affecting their healthcare and quality of life. The main component of the project has been the preparation of educational material, which had been reviewed by the International Core Expert Patient Group (ICEPG), as well as by a panel of scientists and medical specialists. More than 50% of the final material was completed in 2012, while the rest was finalised in 2013. Phase II of the project that is the workshop for the Core Expert Group took place in June 2013.
The Expert Patients Programme aims to empower patients with thalassaemia across the world to acquire a better understanding about their disease, thus aspiring to help them become able to participate meaningfully in decision-making concerning their medical and other care. The core component of the Programme is the development of the patients’ knowledge to a level where they are able to do this, through provision of reliable 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.
There is a fundamental shift taking place in recent years in the way in which diseases, particularly chronic diseases, are perceived and 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 actively involved as equal partners. Only fully-informed patients, who know their condition, its holistic care and their rights as patients and citizens, can actively participate in and contribute to decisions concerning their own health. Moreover, the inclusion of the patients’ perspective has paid an integral part in improving 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.
3. Learning objectives
3.1. 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 partners in healthcare decision-making that concerns their own health, but also in a wider context of national health-policy decision-making.
3.2. Specific objectives
The specific learning objectives for patients who will complete the training include:
A group of 6 "expert patients" has been identified and has been invited to form the "International Core Expert Patient Group" or ICEPG. The ICEPG members have been selected on their long-term experience and knowledge of medical, psychosocial and advocacy issues, their active contribution to educational activities at a national and international level and their excellent communication skills and commitment.
The ICEPG members were given by the Board of Directors of the Thalassaemia International Federation (TIF), in collaboration with the TIF office, the mandate to prepare the first draft of this educational material in a patient-friendly and comprehensible manner. This material would then be reviewed by TIF medical experts who will ensure its credibility and scientific integrity. The entire programme is set to be completed in three phases.
Phase I – includes the preparation and finalisation of patient-friendly material that covers areas ranging from epidemiology to psychosocial support, to how to access validated, updated and reliable information on the disease. This was to be reviewed by a group of medical experts.
Phase II – The ICEPG members should then select a second group of expert patients and medical specialists (the reviewers), who would review the draft material prepared in Phase I.
Phase III – This last phase entails the commencement of the programme by 'training of the trainers', i.e., the medical specialists will have to train the ICEPG, who will in turn be responsible to further train national groups of patients in their respective countries, in selected different countries of the world. A Medical Advisory Board, comprised of experts in the field, is to undertake the responsibility of guiding and advising the Core Expert patients on the educational materials.
5. Sustainability And Expansion
The ICEPG, whose members may be rotating, will have the task of overseeing the annual educational activities for the Programme, and also 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 of TIF’s member countries as possible, with 5 members from each country.
6. 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 they received has had an impact on their knowledge, self-esteem, confidence and other aspects of their life, which are mentioned in the objectives above. These aspects will be assessed through follow-up studies 3 and 5 years after the initiation of the programme.
A vision for a successful Expert Patients Programme