TIF Collaborating Centres for Haemoglobinopathies
Improving quality of care for haemoglobin disorders worldwide: A long term commitment of TIF
There is no organized, international, disease-specific mechanism operating on clearly stated evidence-based criteria to account for quality, continuous measurement and improved performance in treating centres for haemoglobin disorders internationally.
As a result, there are vast inequalities in the care that patients with haemoglobinopathies receive across affected countries. Centres of Reference for Haemoglobinopathies are mainly located in Western, developed economies and there are no unified networks for the exchange of knowledge and expertise in order to achieve standardization of care globally.
In 2017, the Thalassaemia International Federation (TIF) launched a voluntary certification programme aimed at internationally-dispersed treating centres for haemoglobinopathies, in an effort to:
- promote standardization of care across treating centres worldwide
- enhance each centre’s accountability for the service they provide to patients, and
- ensure optimum performance levels in the care of haemoglobinopathies worldwide.
Through this Certification Programme, TIF provides:
- On-site audit of the centre’s performance by external reviewers with regards to the quality of the processes, outcomes and structures involved in the care it provides to haemoglobinopathy patients.
- Technical support and recommendations for improvement to reach desired outcomes.
- Networking opportunities with other regional and international centres for the exchange of knowledge and expertise.
Successful centres are granted the Certificate of TIF Collaborating Reference Centre for Haemoglobinopathies, and provided with needs-based technical support and personalized recommendations for continuous improvement in order to reach the desired outcomes.
The Certificate is valid for a period of 2 years before the evaluation team is called back to the centre to ensure that quality of care is maintained.
- Provide authoritative scientific opinions and advice on key topics in clinical management including accurate diagnostic techniques, blood safety, correct iron monitoring and dealing with complications through a multidisciplinary approach in order to achieve continuous improvement within the healthcare delivery system for haemoglobinopathies worldwide.
- Provide a mechanism for internal and external peer evaluation towards excellence and ensure each centre’s accountability for the service they provide to thalassaemia patients
- Establish an international network of reference centres for the delivery of Quality Healthcare Services for haemoglobinopathies worldwide
- Improve patient and program safety in all activities and initiatives.
- Facilitate all patients’ access to expert management and contribute to the reduction of inequalities in the care that patients receive.
- Provide educational and training outlets for the centre’s staff for stimulating the organization’s quality improvement efforts. Secondary centres will have the opportunity to send staff for training and continuing medical education to the certified centres.
- Provide networking opportunities with other regional and international treating centres and benefit from staff training and tele-consultation to enable stakeholders promote quality services from central level (government).
- Enhance community confidence in thalassaemia care in all affected countries.
TIF Scientific/ Evaluation Committee:
ELPIDOFOROS S. SOTERIADES, MD, SM, SCD Occupational Physician – Epidemiologist Visiting Scientist, Environmental and Occupational Medicine and Epidemiology Program, Department of Environmental Health, Harvard School of Public Health
ANDREAS POLYNIKIS, MD, PHD Public Health Expert, Ex-Officer, Ministry of Health, Republic of Cyprus
MICHAEL ANGASTINIOTIS MD, DCH Paediatrician ex- Director, WHO Collaborating Centre on Thalassaemia Ex-Director of the, Cyprus Thalassaemia Programme Medical Advisor, Thalassaemia International Federation
DIMITRIOS FARMAKIS, MD, PHD Cardiologist, Assist. Professor, European University Cyprus Medical Advisor, Thalassaemia International Federation
ALI AL ASSAF, MD, MPH Executive Director, American Institute for Healthcare Quality Ex-Professor, University of Oklahoma, USA
ANDROULLA ELEFTHERIOU, PHD, Virologist, Executive Director, Thalassaemia International Federation
JOHN PORTER, Professor, University College Hospital, Blood Diseases (clinical haematology), Joint Red Cell Unit, Sickle cell anaemia, Thalassaemia
ANTONIO PIGA, Professor, Thalassemia Centre-Pediatrics, University of Torino – San Luigi Gonzaga Hospital, Thalassemias and other hemoglobinopathies. Disorders of iron metabolism. Clinical trials on new iron chelators. Magnetic Biosusceptometry by SQUID.
Questions & Answers:
What is certification?
Why apply for a TIF Collaborating Reference Centre status?
• Be placed on the international map of TIF collaborating centres and enjoy international recognition
• TIF will use the centres as collaborating in different projects, including research, and will direct patients to each of these centres to receive treatment
• Receive feedback* on the clinical and managerial aspects of thalassaemia care used in each candidate collaborating centre in order to improve/ enhance performance
• Contribute, through joined activities with TIF, to improving thalassaemia care worldwide • Take part in networking programmes, aiming to support peripheral or secondary centres.
• Form or join a collaborating network with other centres of excellence across the world, for exchange of expertise and joint research projects
• Receive a certificate which may be used to meet certain government/donor certification requirements
*The input and improvement guidelines will be given by TIF’s Evaluation Certification team
What does the TIF certification process involve?
On-site audit of performance by external reviewers: A process in which external reviewers from certifying agencies determine the extent to which the candidate centre meets the standards of care as these have been previously defined. The audit is planned in partnership with the interested centre. The on-site performance audit represents an opportunity for the health service organization to have its performance validated by external reviewers and receive advice on as well as areas for improvement. The aim of the external audit committee is to recognize areas of excellence as well as identify areas for quality improvement, make suggestions and take actions to reach the desired standards.
Internal self-assessment: The value of certification lies in the internal self-assessment that an organization undergoes in preparation for the survey visit and in the consultative peer review process (with the evaluation team) that is part of the on-site survey visit. The principle of self-assessment is the fundamental basis of certification. It serves as the mechanism by which an organization can assess its own performance, on an ongoing basis, against a set of nationally or internationally developed standards.
What are TIF’s Standards of Quality Haemoglobinopathy Care based on?
• International standards for ambulatory care – JCI 2015
• General Standards – European Committee of Experts on Rare Disorders- EUCERD
• Disease-specific evidence-based guidelines
1. Centre Governance, Building Infrastructure/ Facilities, Staff, Financial, Research, Teaching, epidemiological information, Auditing & Control Mechanisms
2. Patient support: Availability of service, Information, Involvement, Documentation, Security & Privacy, Well-being
3. Quality of Clinical care: Quality and safety, Diagnosis of long-term complications, Blood transfusions, Diagnosis procedures, Clinical monitoring (iron overload), Treatment, Infections, Tests, Nutritional monitoring
4. Patient-Reported Outcomes (consists of interviews with patients being treated in the Centre in order to determine the quality of the received treatment from the patient’s perspective)
Who can apply?
• Treating centres of thalassaemia across the world, whether they are hospital attached or stand-alone haemoglobinopathy centres, through their administrative hierarchy.
• Ministries of Health may apply directly to TIF for the certification of one or more centres in their country since they are responsible to support any quality improvement measures.