The Case for Information


Making the Case for Information: The evidence for investing in high quality health information for patients and the public

In 2013 the Patient Information Forum (PIF) commissioned research to identify the benefits of investing in health information. The project, which looked at over 300 studies, found that there are good business reasons to justify the investment of more time, money and training in health information provision and support. These include positive impacts on service use and costs, substantial capacity savings, and significant returns on investment by increasing shared decision-making, self-care and the self-management of long-term conditions.

There are powerful legal, moral, ethical and financial incentives for providing quality information to enable people to better manage their health and wellbeing and make fully informed decisions about their treatment and care. Health information specialists have a vital role to play in championing high quality health information and in campaigning for significant and consistent investment in the provision of high quality services and resources.

You can download a copy of the Executive Summary or full report with details of all the evidence. There are also three 2 page summary briefings aimed at specific audiences:

In summer 2014 we undertook an evaluation of the Case for Information. The final report can be read here:

The Case for Information is compelling

pif-exec-summary-cover-smalThe provision of health information to patients and the public is now firmly embedded in health policy across the UK. Providing access to quality health information and support is crucial to unlocking what has been termed the ‘blockbuster drug’ of patient engagement. Patient engagement is vital to help people manage their health, make informed decisions about their healthcare and reduce financial pressure on the health service.

Yet information for patients, in most places, remains a ‘nice to have’ instead of a ‘must do’. Whether someone receives information to support their care is currently a lottery. Despite the rhetoric, we are a long way away from truly informed decision-making for all.

The advantages of improving access to good quality information (and the equally clear drawbacks of not doing so) are so great that consumer health information services must be properly planned and appropriately resourced. This requires dedicated budgets and clear lines of responsibility and accountability. To do any less will continue to diminish patients’ experiences of healthcare, compromise their safety, health status and wellbeing, and waste increasingly scarce public resources.  Given the weight of the evidence contained herein, to not support patients and the public with better information, is bordering on negligence.

There are good business reasons to justify health commissioners and provider bodies investing more money in consumer health information and support.

  • Better health information can have significant impacts on service use and reduce costs – This includes reducing the numbers electing for major surgery, wasted medications, demand for GP consultations, A&E attendances, emergency admissions, re-admissions and the amount of time spent in hospital, as well as reducing compensation and litigation costs. Emergency admissions among people with long-term conditions that could be effectively managed in primary care cost the NHS £1.4 billion annually; and more than £1 billion is currently wasted through low adherence to, and the misuse of, prescribed medicines.
  • Ending the ‘silent misdiagnosis’ could save the NHS billions of pounds – Correctly diagnosing patients’ preferences could save the NHS billions of pounds because well-informed patients choose fewer treatments, and involving people in decisions about their healthcare helps to reduce unwarranted variations in treatment.
  • Increasing the self-management of long-term conditions can yield significant returns on investment – The management of long-term conditions accounts for 70% of total health spending. In giving rise to the greatest pressure on health resources, it also presents the greatest scope for reducing costs.
  • Actively engaged patients incur lower costs – Evidence from the United States shows that more active participants in treatment decisions and self-management incur significant lower costs, overall and for different long-term conditions. More actively engaged patients are also less likely to experience a medical error or be readmitted within 30 days of discharge. A study for the Commonwealth Fund found the cost of health care to be 21% higher for the least activated patients than for the most activated.
  • Current payment schemes provide little incentive to enhance patient experience, including through improved information and support – Yet research shows that information provision increases patients’ satisfaction and their positive experiences of healthcare. This will be far more important in the reformed health service.
  • There are clear links between patient experience, quality and financial health – Evidence from the United States clearly demonstrates a positive association between excellent patient experience and the market performance and financial health of providers, as well as a positive association between quality and financial performance.
  • Positive patient experience and feedback will attract customers and reassure commissioners – With the introduction of greater competition, choice and transparency into the UK health system, providers are more likely to focus on improving their patients’ experience. From a business perspective, this is both a major risk-management issue and a significant opportunity.

The business case in context

The challenge across all UK nations is to provide high quality, patient-centred care in the face of rising demand, tightening financial constraints and demographic changes.

Patients are at the centre of health policy-making. For example, in England, the intention is that shared decision-making should be the norm – ‘no decision about me, without me’. In Scotland, this is expressed as the concept of a ‘mutual’ health service. Achieving patients’ active engagement and involvement in their healthcare has become a key goal for policy-makers and is central to government plans for the NHS. This includes ideas of shared decision-making, self-care/self-management and personalised care planning.

Information, and access to it, is now firmly embedded in health policy across the UK – including in the NHS Constitution and the Health and Social Care Act 2012 (in England), the Patient Rights (Scotland) Act 2011, Together for Health (in Wales), Quality 2020 (Northern Ireland) and in professional codes of conduct. There is a greater focus on quality through schemes such as the Information Standard, and delivery channels for information such as NHS Choices, and NHS Inform in Scotland and NHS Direct Wales. The Power of Information, the ten-year information strategy from the Department of Health, published in May 2012, sets out a framework for transforming information within the NHS and establishing it in England as a service in its own right.

Financial and service pressures mean that patient engagement is now seen as a necessary part of a more modern and efficient health service rather than as a ‘nice to have’ extra.

Research shows that engagement improves patients’ knowledge, experience and satisfaction, reduces costs through greater self-care/self-management and more appropriate use of services, and leads to improved health behaviours and adherence to treatment.

Patients’ ability to engage depends on finding and using health information to increase their understanding, and being supported to develop the motivation, confidence and care skills needed to actively manage and improve their own health. There is clear evidence that more active patients enjoy better health outcomes and incur lower costs.

Investing in high quality consumer health information and support, therefore, is not only the right thing to do from an ethical standpoint as a crucial element of patient-centred care; it is also a financial and clinical imperative.

Achieving better patient experience is not just important on moral grounds. It also brings wider benefits in terms of improved outcomes and reduced service costs. Research also shows that health services which score well on patient experience also perform well on clinical quality. Such findings endorse the view that access to good quality health information, education and support is key to unlocking what has been termed the ‘blockbuster drug’ of patient engagement.

A frustrated patient

Despite all the rhetoric and policy, investment in the development and delivery of health information at a local and national level is generally uncoordinated and in many cases absent. Many NHS Trusts or Health Boards have no organisational strategy for health information, quality assurance processes, dedicated budgets or staff.  Information production and provision is piecemeal and seen as a ‘nice to have’, rather than an essential. Therefore information provision is patchy. Some geographic areas and conditions are very well served, others have little or nothing. Many health professionals still do not routinely provide their patients with information. Where they do it is not routinely documented what has been provided not what impact is makes on health outcomes and/ or quality of life.

If you want to develop a business case for information and support for your organisation it is important to Identify what policies, priorities or objectives drive your organisation and use these drivers to promote patient information internally. For example, financial savings, risk management, patient experience or full filing your mission.  Link information to the strategic direction that your organisation wants to take.  Think about the important levers for change – reducing costs, improving patient experience, national policy and NHS mandatory requirements, legal obligations, such as rights and informed choice and your organisations reputation.

Key Points

  1. Thumbs-upStatutory regulation 17 under the Health and Social Care Act 2008 requires all health and social care providers to provide service users with appropriate information and support in relation to their care or treatment and to encourage service users, or those acting on their behalf, to understand the care or treatment choices available to the service user, and discuss with an appropriate health care professional, or other appropriate person, the balance of risks and benefits involved in any particular course of care or treatment”
  2. Good information has the potential to reduce costs – can lead to better use of services,  prevention of re-admission, reduces hidden costs such as extra staff time needed and resources when things don’t go as planned, enhanced recovery after surgery, safe discharge procedure. By giving the right amount of information and by having a comprehensive well thought out policy, NHS organistaions can reduce waste, using economies of scale – printing etc.
  3. With competition increasing service providers need to stand out from the crowd – by having a high standard of health information organisations can build a solid reputation for quality, and for meeting the needs of their patients as a priority.
  4. Patients want information – communication and information always come up as what’s missing in complaints, in reporting of adverse incidents and in surveys. For example, in the Information Centres analysis of complaints in the NHS, the third highest area of complaint was Communication /information to patients.  In the national out patients survey, over a third of people were not given any information about what they should or should not do after leaving hospital and over two fifths were not given any information on the side effects of their medication.
  5. How healthcare is experienced by patients can be just as important as what treatment they receive. Patients wish care to be delivered in a way which works with them, and this often does not happen.
  6. Health literacy is essential for good health. If people cannot obtain, understand and use health information, they will not be able to look after themselves well or make appropriate decisions about their health.
  7. There is good evidence that well-designed printed and electronic information can help to improve patients’ knowledge and understanding of their condition.
  8. In any situation where informed consent is required, doctors are required by their professional regulator to secure consent in the context of a shared decision with the patient about which treatment to select. For example, the GMC’s guidance for doctors on standards for professional practice, Good Medical Practice, states that they must give patients the information they want or need in a way they can understand. Doctors must make sure, wherever practical, that arrangements are made to meet patients’ language and communication needs.
Page last updated: 2/1/2018