The pace of development in the biomedical sciences today, and its potential impact on our lives, has led to a growth in public interest in science - an interest that has been fuelled by recent high-profile controversies, such as BSE, GM foods and organ retention. The nature of society has also changed over the last 50 years: where people might once have accepted ‘experts’ deciding what to do, now the tendency is to be more questioning, and to regard expert input as advice or opinion to be weighed up against other points of view.

Such shifts are leading to changes in the relationship between professional groups and service users, and between the public and the National Health Service and major government scientific agencies. This was highlighted in February 2000, when the Third Report of the House of Lords Select Committee on Science and Technology recommended that dialogue with the public should become a normal and integral part of science-based policy making.

Several research funding organisations, such as the Alzheimer’s Society and Medical Research Council (MRC) in the UK, and the Juvenile Diabetes Research Foundation (JDRF) and National Institutes of Health (NIH) in the USA, have already begun to involve the public in their decision-making processes. The Wellcome Trust has committed itself to public engagement in its five-year plan, and has involved the public in consultation exercises relating to the proposed large-scale biological collection (in collaboration with the MRC) and in a recent funding partnership with the JDRF.

Discussion

On 25 January 2001, the Wellcome Trust hosted a meeting on Consumer Involvement in Research to foster debate between policy makers, research funders, scientists and representatives from pharmaceutical companies and patient groups. The Trust’s aims were to provide a forum to discuss issues arising from consumer involvement and to inform its own policy in this area.

Disease-specific charities have been the vanguard of consumer involvement. The Alzheimer’s Society, for example, believes that involving consumers - the people who will benefit from research, namely patients with Alzheimer’s disease or their carers - in its research programme can improve the quality of the science it supports. Over the past two years it has radically changed its research-funding process to involve consumers at every stage: strategy setting, review of grant applications, grant award panels, and dissemination and implementation of research results. The entire process is a partnership between consumers and scientists, and researchers say that the most penetrating questions often come from the consumer members of the award panel.

For the JDRF, consumers are not only involved at every level of the organisation, they are its founders, fundraisers and leadership. Parents of diabetic children or diabetics themselves have a deep personal commitment to keeping the research aligned with the JDRF’s mission to find a cure for type 1 diabetes. Collaborating closely with the scientific community, they set research priorities (for example, how much money should be spent on complications and how much on prevention) and are ultimately in charge of deciding which grants are funded.

Involving consumers in scientific decision making with a strategic disease focus may be more straightforward than it is with basic research, where the link with health outcomes is more indirect. The issues are somewhat different for the Wellcome Trust and publicly funded research funding agencies such as the MRC or NIH - all of whom support a broad spectrum of basic, applied and clinical research.

Nevertheless, for more than a decade the NIH has successfully involved consumers in many aspects of the scientific agenda - including trial design, policy setting, fundraising and review of grant applications. Early last year, the MRC took steps to follow suit by setting up a Consumer Liaison Group to advise on consumer involvement in MRC activities and highlight consumer interests and concerns.

While the word ‘consumer’ may not be the most appropriate term for the role - implying taking or receiving, whereas the emphasis should be more on partnerships - participants at the Wellcome Trust’s meeting, from industry, the government, funding agencies and patient groups, were overwhelmingly in favour of consumers being involved at all levels of scientific decision making. Consumer involvement should be considered as part of a much broader agenda, concerning issues of accountability, public trust, and the building of relationships with the public.

In the long term, a better public appreciation of the nature of scientific enquiry could lead to more realistic patient expectations about what science and medicine can and cannot do, and a greater understanding of the complexity and uncertainty underlying issues such as informed consent and inherent risk. In addition, consumer input will often provide a new perspective and may actually lead to improvements in the quality of research. Furthermore, consumers can act as an influential channel for external communication. The NIH has found that consumers help communicate complex information at a level that the public can understand, and sometimes even serve as advocates of science to the public.

Practicalities

Organisations should not, however, rush into involving consumers without careful consideration of the issues involved. The role and level of influence that consumers will have within the organisation needs to be clearly defined in order to protect against disappointment and avoid false expectations. Organisations also need to decide how to incorporate the consumer advice they receive into their processes, recognising that this advice may on occasion be difficult or uncomfortable for the organisation to accept. Answering these questions may actually help funding agencies to determine their consumer group - whether it includes patients, carers, donors, researchers or members of patient or pressure groups.

There was consensus at the meeting that it is impossible to achieve complete public representation. Given this, research funders need to decide whether to recruit consumers whose views are aligned with or different from their own. More importantly, perhaps, organisations need to be aware of the potential biases that can be introduced into their consumer groups through the type of selection and recruitment process they choose to adopt. For example, the NIH selects consumers who, although not scientists themselves, have experience or knowledge of particular diseases or issues - a requirement that affects their ability to represent the whole of society. Indeed simply by virtue of their willingness to give up time to participate in scientific decision making, consumer representatives could be said to belong to a particular social group or type. Care has to be taken to ensure that less vocal or less interested groups do not get overlooked.

Organisations planning to involve consumers need to anticipate obstacles, such as internal resistance in the organisation, or political and ethical factors introduced by consumers that may hinder - even prevent - research from going ahead. In addition, logistical factors such as reimbursement and the impact on working practices will need careful consideration, and systems for selecting consumers, and providing them with long-term support and training once they are recruited, will need to be established. The JDRF, the Alzheimer’s Society and NIH, for example, all train their consumers not just in research-related issues, but also in personal development and empowerment, to enable consumers to contribute effectively to debates.

One of the elements that often hinders consumers from having an effective input into scientific decision making is the language and shorthand used by specialists. Organisations embarking on consumer involvement in research need to be aware of this and take steps to minimise the impact. In this context it is also important to recognise that consumer representatives involved in scientific decision making may, over time, become experts in the specified area and adopt this language and shorthand themselves. There may, therefore, be a need for on-going recruitment and regular turnover of consumer representatives to minimise the impact of this, as well as allowing ‘consumer experts’ to have a role within policy making.

There is unlikely to be a generic model for consumer involvement that will suit all organisations, and each funding agency will have to find mechanisms appropriate to its structure and goals. One option is to ‘pilot’ involvement in particular areas of activity.

Public confidence in the biomedical sciences is crucial if research is to advance and ultimately lead to improved healthcare. Such confidence, it could be argued, can only be brought about if the public is knowledgeable about science and its aims and has confidence in scientific decision making, representing a movement beyond public understanding of science toward public ownership of science.

See also

• Science and the public: A Review of Science Communication and Public Attitudes to Science in Britain. Order the publication or download the pdf
• A matter of opinion: Article describing public attitudes to science in Britain

External links

• National Health Service
• Alzheimer’s Society
• Quality Research in Dementia
• Medical Research Council
• MRC Consumer Liaison Group
• Juvenile Diabetes Research Foundation
• National Institutes of Health