A new centre based at the Welsh school of pharmacy will encourage patients in Wales to rely on their own judgments as well as those of physicians in the treatment of chronic illnesses.
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At the unveiling of a plaque to mark the centre's opening, left to right, Sam Salek, Sir Richard Sykes, Glenys Kinnock and Sir Brian Smith |
The emphasis will be on patients' perceptions of how their conditions and treatments affect their quality of life. The aim is to create a dialogue that helps the patient and doctor to become aware of the non-medical factors that affect the patient's condition, so that they might jointly make more rational decisions that could result in a change in dosage or a new medicine.
The new centre was officially opened by the chairman of Glaxo Wellcome Plc, Sir Richard Sykes, on November 26. Opening the proceedings, the university's vice-chancellor, Sir Brian Smith, emphasised the challenge of effective health care delivery and the balance required between limited resources and patient choice. He said that the mission of the new centre was to provide outcomes from quality of life research projects and to establish closer links between social sciences, psychology and medicine.
Sir Brian praised the new centre's director, Dr Sam Salek, for his leading role in establishing a global database which promised greater cost-effectiveness.
Sir Richard expressed his gratitude for the opportunity to support the centre, which he said had already earned an excellent and deserved reputation in the development of instruments to measure quality of life through a compendium currently used in more than 50 countries. Within drug development, the importance of assessing quality of life had undoubtedly increased and would continue to do so, especially as researchers focused their attention on diseases and conditions for which objective measures were not readily available. Far from being a "soft", surrogate end-point, quality of life was a true measurement that could be used regularly to complement the more traditional parameters of safety and efficacy in both clinical trials and practice decisions.
Sir Richard expressed the belief that new medicines needed to be in wide use in the market place before health outcomes data could be employed to prove their cost-effectiveness or value. He was concerned that the need for additional evidence might be used to slow down access to new medicines in order to delay the financial impact of new drugs on health budgets. Understanding the health outcomes of a particular treatment was a dynamic process: it did not begin at the start of clinical development and finish at the time of a regulatory submission. The impact from the market place was necessary, and complex judgments about "value" could not be accurately taken by a small group of people such as the National Institute for Clinical Excellence in advance of the medicine's wider usage.
Sir Richard said that the industry and health care payers, in partnership, should explore how best to allocate resources or create a "pilot" approach in which new medicines were used for a time - say, three to five years - while the company collected real life data upon which longer term decisions could be more accurately based.
Returning to the theme of the new centre, Sir Richard said that it created a great opportunity for academia and the industry to work together to develop new quality of life measures that would be essential in socioeconomic research to determine the benefits of medicines for patients and society at large. Dr Salek had already laid a firm foundation and made a visionary start in a process that would bring international success to Cardiff university and the Welsh school of pharmacy.
Mrs Glenys Kinnock, MEP (Lab, South Wales East) welcomed the centre's guiding principle - an emphasis on the quality of life that put patients at the centre of the delivery of health care, a position they should always occupy. She said that support for socioeconomic research in the evaluation of medicines - again with a role for quality of life - was one of the key initiatives in the fifth framework programme of the European Commission's priorities for supporting research activities across the European Union. In total, some £5bn had been made available for collaborative projects across Europe and she wished the centre every success in its bid for a share of this support.
Like Sir Richard, she emphasised the value of partnership between the industry, academics and patients and said that the centre had a potential impact in three areas: first, in creating greater awareness of the needs of the nation's most vulnerable patients; secondly, in demonstrating the importance of involving patients and carers more closely in decision-making; and thirdly, in developing methodologies instrumental in improving quality of life for all patients. She congratulated Dr Salek and the university, and predicted that the centre would become an important player in driving health care developments forward for patient benefit.
Dr Salek said that the establishment of the centre was a timely move towards believing in the power of consumerism in health care. Once patients realised they could influence their quality of life through a new patient-doctor relationship, Britain's health care system could strive for advancements on a non-medical basis. Cardiff would be the first centre in the United Kingdom to progress that approach from a research level to clinical practice.
Dr Salek said that the benefits of the centre were incalculable, particularly when one considered the high incidence of patients who discontinued treatment.
"Clearly, adverse effects, a perceived lack of treatment effects, and consequent impairment in quality of life are significant causes of non-compliance," he said. "Systematic measurement of patients' quality of life in the centre should help to redress this."