Communicating about screeningBMJ 2008; 337 doi: http://dx.doi.org/10.1136/bmj.a1591 (Published 22 September 2008) Cite this as: BMJ 2008;337:a1591
- Vikki A Entwistle, professor1,
- Stacy M Carter, senior lecturer23,
- Lyndal Trevena, senior lecturer3,
- Kathy Flitcroft, research fellow4,
- Les Irwig, professor4,
- Kirsten McCaffery, senior research fellow4,
- Glenn Salkeld, professor4
- 1Social Dimensions of Health Institute, Universities of Dundee and St Andrews, Dundee, DD1 4HJ
- 2Centre for Values, Ethics and Law in Medicine, University of Sydney, Sydney, NSW 2006, Australia
- 3School of Public Health, University of Sydney
- 4Screening and Diagnostic Test Evaluation Program, School of Public Health, University of Sydney
- Correspondence to: V Entwistle
- Accepted 21 June 2008
People are offered a wide range of screening tests by diverse providers. For example: maternal and child health services screen for genetic conditions and developmental problems; general practitioners screen for cardiovascular risk factors; NHS programmes screen for bowel, breast, and cervical cancer; and commercial providers offer various health assessments, including body and gene scans. Provision of tests is not well regulated, and there is a bewildering amount of information of variable accuracy in the public domain.1
It is unclear how healthcare providers should communicate about screening in order to support appropriate uptake. And what constitutes appropriate uptake is also contested because of disagreements about the merits of particular tests and tensions between concerns to promote health and to respect autonomy.2 3 4 Debates about communication have tended to consider two types of approach, which we call “be screened’ and “analyse and choose.” We consider their problems and propose a third approach, “consider an offer.”
The be screened approach aims to persuade people to have screening, usually with a view to promoting health gain, cost effective service provision, or profit.2 3 4 Its key features are encouragement to be screened; an emphasis on the benefits of screening and de-emphasis of potential harms; and a lack of recognition that it might be reasonable not to be screened.
This approach is found in commercial advertisements and some invitations to participate in government funded screening programmes. For example, the leaflet Breast Cancer: the Facts, from the NHS Breast Cancer Screening Programme presents screening as necessary for women aged over 50.5 It asks, “Should all women have breast screening?” and gives no hint of any scope for a negative answer. The leaflet highlights the benefits of mammography and describes the main processes but plays down potential harms. It does not mention that screening may lead to overtreatment or that clinicians and epidemiologists seriously dispute the value of breast screening. It gives no indication that women might reasonably choose not to be screened, and includes a breast awareness code that instructs women to “Go for breast screening every 3 years if you are over 50.”
The main criticisms of the be screened approach are that it inadequately reflects the benefit-harm profile of screening tests and fails to respect autonomy because it does not facilitate informed decision making by individuals.6 7 8 Some communications with features typical of this approach purport to facilitate informed choice, but they present only one option: to be screened.
Analyse and choose
The analyse and choose approach is one response to criticisms of the be screened approach. It emphasises respect for autonomy and treats this as a matter of ensuring that competent individuals have sufficient understanding of their options and can make intentional, sufficiently independent choices.9 It assumes that sufficient understanding requires comprehension of detailed research based information about benefits and harms and promotes informed individual decision making based on this.
The key features of this approach are an emphasis on the importance of individual (sometimes independent) choice and the provision of comparative data about the various outcomes of screening and no screening. The approach is exemplified by decision aids, which seek to present the data in accessible ways.
There are three main criticisms of the analyse and choose approach. Firstly, the implication that everyone eligible for screening should consider detailed effectiveness data may be unnecessarily burdensome. This criticism is particularly strong when expert committees acting in the public interest have reviewed the available research, judged the tests to be broadly effective and acceptable, and supported the introduction of government endorsed screening programmes. Secondly, there are concerns that encouraging detailed decision analysis by individuals might not lead to good choices (it might disrupt people’s usual effective decision making processes) or deter uptake of effective, appropriate screening.4 7 10 11 Thirdly, some critics think this approach overemphasises rational and independent decision making—reflecting an inappropriately narrow understanding of autonomy.
Recent research into decision making has highlighted some potential downsides of detailed decision analysis and maximising (aiming to make the best possible choice). It suggests that heuristics and “satisficing” (aiming to make good enough choices) can be less burdensome and yield better decisions and outcomes.12 13
The understanding of autonomy that prevails in health care has been criticised for focusing too narrowly on discrete decisions, over-idealising rationalism, and inappropriately assuming that interpersonal collaboration and trust will compromise rather than promote autonomy.14 15 16 Although autonomy relates to individuals, it is both developed and exercised in the context of social relationships.16 17 18 People who use “intellectual outsourcing” to help shape their opinions, and who do not process detailed data for themselves before they choose or act, do not necessarily fail to exercise autonomy,18 although others who try to impose their views and discourage competent consideration of alternatives do tend to undermine it.
Neither of the two approaches above considers the importance of the interests and trustworthiness of those who offer and advise about screening. This failing, together with recent evidence about what patients value about communication with health professionals19 and involvement in decision making,20 leads us to suggest a third approach to communication about screening.
Consider an offer
The consider an offer approach is designed to respect personal autonomy without overburdening people with unwanted information and decision making tasks and without deterring uptake of effective and personally appropriate screening. Within this approach, communicators either recommend or offer screening or help people to consider recommendations or offers from others. They openly explain and discuss the basis for the recommendation or offer; encourage and facilitate an individual assessment of the recommendation or offer (including consideration of the potential bias and trustworthiness of those making it and of its personal relevance); provide or facilitate access to further information if that is required; and acknowledge that the recommendation or offer might reasonably be refused.
Just what information and how much detail are required will vary across screening tests, contexts, and individuals, but will usually include a summary of the potential benefits and harms of the test considered, consideration of any known objections to it, information about test providers, and factors that might affect the appropriateness of the test for particular individuals (table⇓). The optional extra information might include detailed data on outcomes and, more controversially, other people’s experiences and preferences, especially in value laden contexts such as screening for fetal abnormality.7
When presented with a screening offer, people might reasonably respond in various ways. Some might judge the trustworthiness and personal relevance of a screening offer on the basis of the initial communication; others might habitually seek and follow the advice of a trusted health professional; and others might want to evaluate research evidence for themselves—at least for some tests. It should be feasible to respond to these varied preferences even when communications are necessarily standardised to some extent. For example, mailed invitations from national screening programmes can encourage people to consider whether they would like more information and tell them where to find additional resources and personal support.
This approach respects autonomy because it encourages and enables people to consider screening offers carefully. Although it can incorporate strong recommendations, it does not close down opportunities for thoughtful refusals of screening. For example, practitioners will avoid presenting screening as routine16 or necessary and will ensure people feel they can safely say they do not think a test is right for them. The consider an offer approach can facilitate informed decision making about screening, providing summary information about the benefits and harms of screening to all and decision aids with more detailed epidemiological information to those who want them (figure⇓), but it does not assume that autonomous choice or informed decision making will always require every individual to work through detailed statistics for themselves.
Because it accepts the reality of intellectual outsourcing18 and the importance of trust, the consider an offer approach makes people vulnerable to manipulation: trust can be both inappropriately placed and abused.21 However, this vulnerability is arguably no greater than with the be screened approach. Consider an offer provides some protection by discussing the basis of recommendations or offers, facilitating assessment of the trustworthiness of those who make them, and raising questions about the adequacy of the information supplied. The further protection that the analyse and choose approach offers by encouraging rational personal decisions based on detailed data on outcomes is not practical for many.
For screening programmes backed by agencies such as the National Screening Committee, the consider an offer approach should not adversely affect uptake of broadly effective tests. Communication consistent with this approach should help people to recognise when providers are trustworthy. In contrast, the be screened approach might lead to mistrust over time if people come to realise practitioners have underplayed the downsides of screening.
The consider an offer approach is less demanding on those eligible for screening than the analyse and choose approach, but it puts more onus on providers to communicate in a range of ways to meet diverse information needs. Some programmes already use features of consider an offer—for example, information about newborn bloodspot tests presents recommendations and explanations and points out that tests are not compulsory.22 But if the approach is found to be successful, health service agencies will need to develop more resources to support adoption by front line health professionals.
Cite this as: BMJ 2008;337:a1591
Contributors and sources: The article originated from a seminar VAE gave to the Screening and Test Evaluation Program at the School of Public Health, University of Sydney in September 2007, supported by National Health and Medical Research Council [Australia] program grant 402764 and a University of Sydney international visiting research fellowship. The ideas were developed in subsequent discussions, telephone conference calls, and email exchanges. These drew on the authors’ experiences of developing, evaluating, and thinking critically about information resources relating to screening and on their familiarity with relevant literature. VAE had the original idea for the article and drafted the manuscript. All authors contributed significantly to the content and to improving structure and clarity. VAE is guarantor.
Competing interests: None declared.
Provenance and peer review: Not commissioned; externally peer reviewed.