Thalassaemia International Federation leading postgraduate online patient centred medical education

Dr. Androulla Eleiftheriou is the Executive Director of Thalassaemia International Federation (TIF) and an IAPO Board Member. In this specially commissioned article, she explores how patients at TIF have led the way in patient centred medical education. TIF set-up an innovative online MSc degree in haemoglobinopathies in partnership with University College London (UCL), probably the world’s first patient organization and medical college collaboration in medical education, to improve standards of care and treatment globally. 

We have been excelling in medical education since 1986

We were established in 1986 with a mission to promote and implement global and national control programmes for the prevention and treatment of thalassaemia and other haemoglobin disorders in every affected country.

As a patient-driven organization, we pride ourselves in having an internationally recognised educational programme that helps us achieve our aim and mission globally. Our programme is accessed by health professionals, policy-makers, patients, carers and parents. Our programme is key to supporting our global advocacy activities through publications, resources, conferences, workshops, fellowships (short and long duration), laboratory skills focused preceptorships, and e-health/ e-education online applications and educational platforms.

Why did we need an MSc Course?

We needed the MSc because the difference between the incidence of children born with haemoglobinopathies and their health and wellbeing in high-income countries (HIC) and low and middle-income countries is unacceptable.  We now have reduced the incidence of 'unplanned' thalassaemia major (TM) births in HICs to near zero and improved the health care of TM patients so much that they live near normal life spans; many are now parents themselves and even grandparents!

In LMIC we have a very high birth rate of unplanned TM babies, and their health and wellbeing very poor; many die before reaching adulthood. In order to control a recessive gene linked haemoglobinopathy, you first need a quality national prevention programme that can screen-out at-risk couples before they have a child. The at-risk situation is where both couples are healthy carriers of the gene. This requires quality information, awareness programmes and timely screening at a family planning stage. 

You then need to screen each pregnancy, where both partners are carriers of the gene, safely within perinatal settings giving timely, accurate and relevant information to help parents make an informed choice on the continuation of an affected pregnancy. This process has ideally to be done within the first trimester after providing culturally sensitive genetic counselling and support.

But most importantly, we must take care of children born with TM. These patients need monthly blood transfusions and daily iron chelation (removal) therapy involving orphan drugs. They risk developing complications in vital organs over time if poorly treated. The HPs must be able to work as a multidisciplinary team of specialists and monitor the patient’s blood transfusions, heart, liver and the endocrinal organs regularly. The HPs must maintain the psychosocial welfare of these patients to the highest standards. The mental health of patients determines their treatment adherence. If untreated the prognosis is premature death.

The global challenge we face today is that we do not have enough qualified health professionals in low and middle-income countries to manage the prevention and treatment programmes to international quality standards. We have to improve the quality of these HPs through accessible, affordable and quality medical education. An online MSc with UCL fitted our requirements. 

Creation of an innovative partnership with the world’s most prestigious medical colleges 

Our MSc was one of the most innovative and far-reaching projects taken on by TIF. This was developed initially with the University College London (UCL), one of the worlds’ most prestigious medical colleges with high academic standards and an excellent reputation in distance and e-learning courses. 

UCL partnered with us because they recognised our global reach, expertise and reputation as a patient-driven organization committed to improving treatment standards globally in an official relationship with the World Health Organization (WHO). We have over 100 member associations in over 60 countries. The MSc offered us a unique partnership to address a very specific health concern that needed niche expertise in haemoglobinopathies. 

Course curriculum design

The course curriculum is patient-driven having a quality assured content and teaching practice. It incorporates the latest evidence base and best practice and links the students to a global community of practice for support. The programme’s faculty includes world-renowned international experts. It is supported by the European Haematology Association and endorsed by the International Society of Haematology.  The first curriculum in detail. 

Going forward in 2017

The UCL collaboration with TIF has been very productive, more than 80 people have graduated with and MSc. Over 40 were medical specialists and an equal number were specialised nurses in the field. 

TIF is now bringing the course home to Nicosia Cyprus. We will now partner with the University of Nicosia and plan to continue to build upon the excellent pioneering work with UCL to enhance this world-class patient-driven course. The new course is being prepared and will be launched in December 2016.

In Cyprus, good quality medical education has helped us to reduce the unplanned incidence of thalassaemia major to near zero and prolonged the health and wellbeing of patients to near normal life spans. We hope many of you will join us to spread this medical education programme globally to benefit all our patients globally!