The Pharmaceutical Journal
Vol 276 No 7398 p509
29 April 2006

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Health Service Research and Pharmacy Practice

How to involve the general public in research, medicines choice and health

Harry Cayton, national director for patients and the public at the Department of Health, gave an opening plenary lecture on “Medicine choice and public involvement in health”. He described how science had stood to replace religion as a source of authority in the post-religious age. But now we were moving into the post-science age, where the public were more enquiring and did not believe everything that scientists told them. This meant all health professionals had to take on a greater responsibility for involving patients in treatment decisions. The professions also needed to change. They had to jettison the concept of autonomy and move towards teamwork and partnership. Mr Cayton thought that joint training was necessary to achieve this shared professional responsibility and said he would welcome a common foundation year for all health students before they diversified to become nurses, doctors, pharmacists or any other health professional.

Using data obtained from the National Patient Survey and other research Mr Cayton demonstrated a mismatch between the professionals’ view and the public’s view of the use of medicines. The prescriber of the medicine perceived the benefits more than they perceived the side effects, whereas for the patient it was the other way round.

Mr Cayton said there was need for a better understanding of risk, something the Better Regulation Commission was looking at. The commission, which provides independent advice to government, will look at how our understanding, acceptance and management of risk as a society influence our approach to regulation.

Chemotherapy side effects

The perception of the risk of side effects from a chemotherapy drug (paclitaxel) was the subject of a research presentation. Neil Carrigan, of the school of healthcare, University of Leeds, had used a web-based study collecting data from people who visited the Cancer Research UK’s patient information site (www.cancerhelp.org.uk). He found that, in line with previous studies, people consistently overestimate their personal risk of side effects from taking medicines when presented with data using verbal descriptors, such as “very common” or “very rare”. A possible solution is to present risk in terms of natural frequencies, ie, one in 1,000 people get this side effect. However even though these provide a concrete reference there was still inflation of the chance of suffering a side effect. The research suggests that people maintain a high level of perceived personal risk in the face of concrete evidence to the contrary and that further research is needed to explore the mechanisms by which people arrive at their estimate of the risk of medicines.

Mismatch in perspectives

A mismatch between the professional perspective and the public perspective was also identified in research conducted into lay perspectives on the prescribing of drugs for dementia. Denise Taylor, of the University of Bath, described how she had worked with the Alzheimer’s Society in the south-west of England to obtain users’ and carers’ views of medicines. Preliminary findings suggest that their views of anti-dementia drugs differ from those from a traditional biomedical perspective in the following areas: perception of efficacy, effect on quality of life and impact on day-to-day life. These were at variance with the quantitative measures usually used to assess the benefits of the drugs and called into question what constitutes appropriate patient and carer roles when deciding treatment.

Involvement in treatment decisions

A different perspective of patient involvement in treatment decisions was described by Penny Lewis, University of Manchester. She had investigated pressure from patients on the decision to prescribe in secondary care and described how, by using a critical incident technique, she was able to focus on uncomfortable prescribing decisions. Over half the doctors interviewed described such an incident caused by perceived pressure to prescribe. Patients involved in the incidents were often described as “well informed” and “manipulative”. Interviewees resisted conceding to patient pressure in around half of the incidents. Referral was often the method of resistance, passing the problem on as opposed to reaching an immediate resolution. Reasons given for capitulating to patient’s requests included an uncertainty in diagnosis, maintenance of good doctor-patient relationship, conflict avoidance and to get rid of the problem.

Patient involvement was just one of the factors identified in a study by Karen Rosenbloom, of the medicines management research advisory team at Harrow Primary Care Trust, exploring patient recruitment for medication review in a community pharmacy. Root cause analysis had been applied to identify the difficulties in recruiting patients to the study. Among a plethora of factors was the theme that patients generally wanted their GP’s permission to have their medication reviewed and that they wanted to know what the selection criteria were for the medication review. These factors may be of relevance to the implementation of medicines use review.

Care of the elderly

Following Mr Cayton’s tenet that joint training was necessary to achieve a shared professional responsibility in patient care, it was rewarding to see that this was happening. Michael Gibson, of the Robert Gordon University, Aberdeen, presented a piece of work on the use of undergraduate multidisciplinary team working to improve understanding of care of the elderly. He described how students from nursing, medicine, occupational therapy, pharmacy physiotherapy, radiography, dietetics and social work took part in tutorials to explore the different roles of their future professions based on a case study of an elderly patient.

Research partners

In the closing plenary session, Rachel Purtell and Katrina Wyatt, of the Peninsula Medical School, Exeter, described the DoH-funded initiative “Folk.us”, which was established to facilitate and promote effective service user, patient and carer involvement, in all types of research relating to health and social care in north and east Devon. They described how involvement was not as research subjects but as research partners. Within the research governance framework, participants or their representatives should be involved wherever possible in the design, conduct, analysis and reporting of research.