Choosing who provides your care is empowering but only if you know how

I want that one, or do I? Maclauren70, CC BY-NC-SA

Many governments are going to great lengths to provide better information about the quality of health and social care services. In the US, the Centers for Medicare and Medicaid recently announced a raft of improvements to Nursing Home Compare, probably the most well-established comparison site for long-term care in the world.

In England, the NHS recently announced a number of improvements to its websites and continues to launch new information services to improve transparency and drive up standards. Recent initiatives include the launch of a site to compare diabetes care by Public Health England. And Bruce Keogh, medical director of the NHS, said that surgeons have a “professional and moral responsibility” to collect and report data on death rates for the public and for other clinicians.

Yet, as we show in a new paper, a number of studies demonstrate that public awareness and use of these sites is alarmingly low. Market research from the US suggests that people spend more time researching their choice of refrigerator than they do choosing a doctor or hospital.

Nor are these findings confined to the US or UK experience. Elsewhere in Europe, similar sites are also not regularly used. So what can be learned from past research? Our paper is an attempt to bring the research together to help with the provision of information in the future.

Why provide information?

Promoting and enabling choice in publicly-funded health and care services has gained popularity in many countries over recent decades. In part, choice is intended to empower individuals to have more control over their care. It also reflects a belief by many economists that choice can bring about improved care and outcomes as care providers compete for “business.”

In the early 2000s, the UK government gradually began extending legal rights to choice in the NHS in England. NHS patients are now free to choose a hospital and consultant-led team for elective care and from January will be able to choose a GP anywhere in the country. The choices available in social care also mean that publicly-funded service users can choose their residential care home and elect how to spend personal budgets.

But for choice (and competition) of care provider to live up to its potential, the public needs a market of providers that offer the desired care service at an affordable cost, are reasonably close to home and offer a reasonable waiting time. Funding systems must allow money to follow the patient. Users and patients must have the ability and capacity to behave like consumers – not just in their choice of provider – but also in whether they are able to switch between providers easily. And essentially, people also need good comparative information about care providers to make informed decisions.

Providing information is difficult

Good information should be empowering. When considered alongside other influential factors, such as location of the providers and recommendations from family, friends, and referring health professionals, good comparative information should drive informed decision-making. The challenge is that good comparative information must be accessible, accurate and meaningful to the public – and those that use it must be able to act on it.

But it appears that few governments or information providers have got it quite right. Numerous reviews of research on public reporting suggest that comparative information is rarely used by patients to make choices.

A key challenge is the complexity of information on quality. The quality of health and social care is notoriously difficult to communicate, as shown in this report on ratings by The Nuffield Trust. Some measures are so complex that lengthy explanations are needed to ensure that results are accurately interpreted. Hospital standardised mortality ratios are a good example of this. Publishing surgery outcomes can also be problematic, for example, where low numbers of patients are treated.

Where information on the same providers is available from different websites, it can become even more confusing. Researchers in the US checked hospital ratings across five different websites and found little overall agreement on quality scores. Some of the nine hospitals ranked first or second by one system were often ranked seventh or eighth by another. Some websites, such as these in Germany and the Netherlands, provide a wealth of information on different indicators and dimensions of quality, trying to capture the complexity of quality in social care. Too much information can be overwhelming for users trying to make informed choices.

It should be no surprise then that a key barrier to choice is the numeracy levels required to understand the statistics, charts and diagrams that information publishers use to convey the quality of providers. Information is commonly pitched at a much higher level than the average literacy and numeracy levels among the public. In a US study, only a quarter of people were able to convert one in 1,000 to a percentage correctly and only three in four doctors could do so. Making things worse, some quality scores are represented by a bewildering array of fractions, percentages, numbers of stars, or other colour-coded images.

For these reasons websites such as NHS Choices in England now allow patients and service users to rate and review their experiences. Anecdotal information is often more understandable and meaningful for some people – even though it brings its own risks as people tend to trust individual stories more than they trust well-researched statistics.

So what would help?

Publishing information is important for other reasons. Healthcare providers have been found to improve their quality in response to reports, simply to improve their own reputation. And while awareness among care professionals is generally low, there is evidence that reports are used by some – such as by councils to contract with care homes in England.

There are also opportunities to increase use by the public, for example, by providing information on the particular aspects of quality that are relevant to the individual seeking information. This could be further helped by following best practice guidance on data presentation, which might include, for example, using consistent graphics and avoiding complicated graphs and charts. Given the barriers to accessing the internet faced by many users of health and social care services, other means for displaying the information should be experimented with, for example, using the mainstream media.

Promoting the use of quality information is also needed. Professionals should be enlisted to educate the public about the natural variations in quality and the merits of quality information and public reporting systems.