Patients saw themselves as the experts on asthma, the conference was told. Such patients wanted information about their condition and their medicines, but often sought this from friends and family who suffered from the condition, rather than from health care professionals. Dr Theo Raynor (head, division of pharmacy practice, University of Leeds, and a member of the PECMI [Promoting Excellence in Consumer Medicines Information] steering group) outlined the research study from which these conclusions had been drawn. In 1999, he had recruited 24 chronic asthma sufferers and looked at their views on medicines, and the information they received about these medicines. The group varied in age from 13 to 82 years.
Patient information leaflets (PILs) were seen to represent the priorities of the manufacturers rather than the patient and perhaps as a result were not viewed favourably, and were often thrown away. Personal experience was highly prized and the group felt asthma sufferers should be involved in producing PILs. Those who did read the leaflets reported receiving contradictory verbal advice from health care professionals and were left feeling unsure of whom to trust. Pharmacists were the preferred source of information about medicines, but nurses were the most trusted health care workers.
An important issue for pharmacists was that patients needed to be shown how to use an inhaler correctly. One woman had been prescribed inhaler devices for 20 years before the practice nurse had showed her the correct technique. This information changed her life significantly: she became an "inhaler evangelist", spreading the information to other asthma sufferers.
Mr Angus Gunn (a patient from Lothian) addressed the conference. Mr Gunn had been in hospital for 10 days during 1999 after a heart attack - or, as the professionals said, "a myocardial infarction". While stressing the high standard of care received during and after his hospital stay, he said that use of medical jargon was a barrier to good communication for the patient. Terms such as MI and angioplasty were baffling and frightening unless explained. Mr Gunn pointed out that a patient might not be taking any medicines on admission, but could take five or more after diagnosis. He felt involvement in the decision making process was an important factor in achieving concordance. Knowing why he needed medication, what benefits and drawbacks were involved, and what would happen if he did not take them were of paramount importance.
When asked about PILs, he said: "They are not user friendly. They are difficult to understand and contain too much information, especially on adverse reactions." In one leaflet, he had found brain tumour listed as a possible adverse effect, which did not encourage him to continue treatment. What he needed to know was: "How likely is that to happen to me?" He thought most PILs for repeat medication ended up in the waste bin, a potentially dangerous situation, as patients would not notice if the information had changed.
Listening to the patient's concerns, an important part of concordance, was a vital aid to medicine taking, argued Professor Alison Blenkinsopp (director, department of medicines management, Keele university). Working with patients suffering from hypertension, asthma and depression, her research team had highlighted differences in perspective between the patient and health care professionals on the subject of medicines and medicine taking. Patients had been found to have very different information needs and understandings of treatment, from those expected by health care professionals. Paying attention to the patient's concerns and providing them with tailored information was an important step towards concordance, she said.
Prescribers often assumed that the patient took medication according to instructions - but this was not always the case. Patients might underuse or stop taking medicines because of their concerns over safety or adverse effects. It was important to explore the patient's agenda by asking how they were getting on with medicines, whether they had felt any different since starting something new. Professor Blenkinsopp highlighted the role of health care professionals in drawing out the patient's ideas and anxieties about medication.
The keys to improving medicine taking were better communications and more patient involvement, said Lord Hunt (Minister for Health in the Lords). Addressing the second day of the PECMI conference, he acknowledged the role of patients as experts in their own condition, and said that there was a long way to go before listening to and learning from expert patients was totally embedded within the health care system. But change was beginning, and medicines "talking" would improve medicine "taking".
Lord Hunt identified changes needed to enable better medicine taking:
Working groups discussed current practice and future development of information to medicines consumers in six areas:
A final panel debate revealed that patient groups were ready and eager to effect these changes. But were health care professionals ready and eager to accept the challenges and opportunities this represented? - Contributed.