Home

About Us

What We Do

Methods

Project Archive

PSP Perspectives

Contact Us

• Project Archive
• Evaluation of programmes
• Evaluation of school enhancement and enrichment projects and programmes
• Public attitudes and deliberative research
• Strategic consultancy, training and facilitation

The UK Biobank – A consultation with nurses in general practice and research

Introduction

The Wellcome Trust, Medical Research Council and the Department of Health are funding the UK Biobank project and together they will be contributing £45 million over ten years. The UK Biobank will be the world’s largest resource from which researchers can study how people’s genetic make-up interacts with their diet, lifestyle and environment to cause common illnesses.

The project will collect genetic information from blood samples, medical records and lifestyle information from half a million volunteers, aged 45-69. This information will help researchers understand the origins of diseases like heart disease, cancer, diabetes and Alzheimer’s.

The three organisations that are funding the project are continuing to consult with the public, health workers, scientists, industry and charities with regard to how the UK Biobank will be set up and run.

Consultation with nurses

This document provides a summary of the key points of the consultation with nurses conducted in February 2003. Twelve separate group discussions were held with practice and research nurses in England, Scotland and Wales. In addition, an in-depth interview was conducted with a representative of the Royal College of Nursing (RCN).

The nurses were positive in terms of the development of the UK Biobank as it would create a useful research resource. Several saw the project as “long overdue” and a “natural progression from the human genome project” as it would establish a “national resource”. A few of the research nurses said that they would use the UK Biobank as a source of control data for their research. It was felt that the UK Biobank resource would support health care planning and therefore offer economic benefits to the NHS.

Nurses raised a number of issues in connection with the project. These issues will be taken into account and will help to develop the pilot studies in connection with recruitment and the operation of the UK Biobank.

Key findings

Recruitment of volunteers

All of the research nurses and some of the GP nurses participating in the consultation had experience of recruiting patients with a specific disease to take part in research projects. Recruitment to UK Biobank differed in that ‘well’ people would be recruited in this instance.

Motivating potential volunteers was perceived as potentially difficult and more pro-active approaches were recommended. It was felt that volunteering should be made as convenient as possible.

Recruitment approaches thought worthy of further consideration were:

• high levels of publicity in advance of the initial contact. It was thought that people would be more motivated to take part in something of which they were already aware.
• Recruiting volunteers at places such as clubs and shopping centres “you need to go to where those people are”
• the use of mobile facilities, as used in collecting donated blood, recruiting passers-by
• using market research techniques for recruiting volunteers; and
• considering other examples of health research that had gone into people’s homes to collect the information and measurements.

Nurses felt the recruitment process was likely to impact on practice workload in a number of ways. It was estimated that there would be large numbers of patients in the target age group and therefore the provision of contact details and writing to potential volunteers would be time consuming, if this was to be done by the practice.

It was envisaged that potential volunteers would contact the surgery for more information on receipt of the invitation letter and to check the bone fide nature of the project. It was also anticipated that appointments may take longer as patients would be likely to raise the matter with the nurse or GP. The nurses felt their role was to support patients and to discuss the issues in order that patients could reach a personal decision

Data collection

In addition to the physical examination, lifestyle data will be collected from participants using a questionnaire. The advantages and disadvantages of sending a postal questionnaire versus nurses collecting this information face-to-face were discussed. Whilst some nurses thought that volunteers would be more honest if they completed the questionnaire alone, others felt that better quality information would be collected using face-to-face interviews. All the nurses felt that developing rapport and asking these types of questions is one of their core skills. It was also argued in a personal interview volunteers could be prompted to include all the relevant details. Practical issues were also raised in relation to people being able to complete the questionnaire which related to literacy levels and understanding of the questions.

In one group it was suggested that market research interviewers could collect the lifestyle data with nurses responsible for taking the blood sample, the medical history and health assessment.

GP nurses highlighted that even in computerised practices there remains a strong paper-based culture and for some consultations only the prescription is recorded. GP nurses therefore recommended that the UK Biobank should be prepared to deal with paper-based records and to acknowledge that information might be incomplete.

Communication

Nurses felt that given the likely information requirements all practice staff should be briefed with regards to the UK Biobank project. It was felt that personal local briefings or practice-based meetings would be the best way of ensuring that all staff were appropriately briefed.

It was felt that a national, high profile advertising campaign, including news items and magazine articles, should be used to raise awareness of the project before letters are sent out to potential volunteers. It was thought that such a strategy would instil confidence in the project and encourage people to take part. Another suggestion was that videos could be played about the UK Biobank project in practice waiting rooms.

In terms of follow-up communication with volunteers, it was suggested that an annual newsletter, supported by a website would be the optimum approach.

Feedback

Two issues were raised in terms of feedback. These were, whether feedback would be available at an individual level, or in relation to the overall project and associated research findings.

There was general acceptance that individual genetic feedback could not be provided. However, this was something that the nurses felt had to be clearly explained to potential volunteers.

Some of the nurses who took part in this consultation were concerned that feedback be given to participants in connection with lifestyle issues. For example, if a volunteer reported high levels of inadvisable behaviour, such as smoking, the dangers should be discussed. Other nurses took the view that whether participants were given this information was an issue of personal choice for the volunteer. It was also debated whether feedback should be available to participants or whether this should be given directly to their GP. It was generally felt that to withhold this type of information would be unethical.

The absence of more specific feedback from the research was not generally thought to be an issue in the context of the UK Biobank.

Informed consent

In terms of consent a number of issues were raised, particularly by the research nurses. All agreed that volunteers must be fully informed and understand what participation will involve. Informed consent was characterised as:

• what information is being collected
• how it will be stored;
• what feedback will be provided
• who will have access to the information; and
• what the information will be used to study.

Nurses felt strongly that consent must be obtained by personnel who had received training and were therefore suitably qualified to obtain consent.

There was some discussion about the need for consent to be an on-going process rather than a one-off event. But some argued that ‘anything other than blanket consent is impractical’.

Access and confidentiality

Nurses felt a key issue for potential participants would be access to and confidentiality of data. The nurses were reassured that those undertaking research would be provided with anonymised data and that those with access to the full identifiable dataset should be suitably authorised.

It was accepted that pharmaceutical companies should have access to data in order to develop drugs. However, in contrast to the public, who suggested that commercial companies should pay to access the UK Biobank in order to fund running costs, some nurses felt that companies should not pay for using the UK Biobank resource. It was suggested that charging for use of the data may limit access. In these cases the nurses were keen that access not be restricted to those who could undertake useful work.

The nurses felt strongly that insurance companies and employers should not be granted access to the information held by the UK Biobank.

Governance of the UK Biobank

As had been recommended by the public, the nurses recommended that a mixture of lay and professional people should sit on the oversight body. It was suggested that the balance should favour those with medical expertise. It was felt that members should have strong personalities and be equipped with the appropriate skills to ensure that the UK Biobank be adequately policed and that confidentiality is maintained. The oversight body’s independence was thought vital for its credibility.

Some nurses perceived a role for the oversight body in terms of reviewing project applications to ensure that a balanced portfolio of work was being pursued.

Value for money

In contrast to the public, who tended to conclude that the project was value for money, the practice nurses in particular felt that the funding allocated to the UK Biobank could be better spent within the NHS. However, research nurses perceived the UK Biobank as a source of “control data” which would provide information from disease free groups, and would therefore be a very useful resource.

Next steps

The UK Biobank is entering an important phase in its governance arrangements. We have recently set up a group in order to develop regulations which will determine how the UK Biobank will be governed, and the ethical rules with which it must comply. The group includes experts in research ethics, philosophy, law, science and social science, and has consumer representation. A draft of this document will be available in April.

We will be conducting further consultation in May among a number of audiences in connection with the draft ethics and governance document. We are committed to listening to the views of both potential participants and stakeholder groups and believe this is vital to the success of the project.

If you would like further information about the UK Biobank a dedicated website can be found at: www.ukbiobank.ac.uk

Site by Livewire