Involving patients – informing patients

Contribution to 2020health’s recent report ‘Too posh to wash? Reflections on the future of nursing.’

By Katrina Glaister, Quality Directorate Facilitator, Salisbury NHS Foundation Trust

In 2010, in a radical shift in health strategy, the White Paper, ‘Equity and excellence: Liberating the NHS’ (Department of Health, 2010a) set out the Government’s ambition to give people more control over their own care; to build health care around the needs of patients. At its launch, the Secretary of State for Health, Andrew Lansley said: “The first principle of the White Paper is that the NHS should ensure that for patients, ‘no decision about me, without me’ is the invariable practice.

It appeared that whilst clinical care might be very good, nurses sometimes treat patients as objects of nursing interventions, rather than people who need caring (Henderson, 2003), and often neglect to involve them in discussions and decisions about their care and treatment. But what is the evidence that involving patients in decisions about their care improves the outcome for the care delivered? Well, the short answer is that whatever nursing discipline you care to look at, there is evidence that doing this improves outcomes. Not only this, but listening to patients can also be cost and clinically effective. Generic improvements include (Coulter and Ellins, 2007):

• health literacy

• clinical decision making

• self-care

• patient safety.

We all have choices and decisions to make in our day to day lives, some will be complex such as buying or renting a flat, some are very simple, such as which brand of tea to buy. However, both these examples are very straightforward compared to some of the life changing decisions that patients have to make about their health.  But they have one thing in common and that is

information. Without information you cannot make a choice nor have any chance of making a wise one. Historically, it was assumed that doctors would act in the best interests of the patient and prescribe care and make decisions about treatment on the patient’s behalf (Deber, 1994). However, the NHS Constitution (Henderson, 2003) makes it clear that amongst other things, patients have a right to be given information. Patients may well have this right but it has been argued that healthcare professionals have substantial power over patients’ decisions by controlling what information the patients receive (Department of Health, 2010b). It has also been suggested that nurses often believe that they know best, which prevents them asking patients to decide about their own care (Deber, 1994).

Perhaps the greatest change in the balance between the amount of information given by healthcare professionals and the amount of information that is available to patients is the internet; its growth triggering an ‘information revolution of unprecedented magnitude’ (Jadad and Gagliari, 1998). However, there is recognition that whilst there is some very good information on the internet, there is some that is not. Recognising that some form of quality mark was needed the Information Standard (The Information Standard, 2009) was introduced. Accredited information providers can display a logo; this gives patients (and indirectly health care workers) reassurance and peace of mind about the quality of the information. It should be remembered however, that information (such as leaflets or web pages) on their own have been shown to

have little effect on patient outcomes, but the combination of oral and written information can improve patients’ experience and, in some cases, reduce health service costs (Greenhalgh, 2009).

When it comes to health information and the patient there are three types: the expert patient, the patient seeking information and the patient who either does not want to know or doesn’t know how to ask. An essential part of nursing practice is to assess patients for their individual, family (or carer) and support requirements. This assessment, amongst other things, helps nurses to identify the information needs so that personalised and appropriate information for the particular point in the patient’s journey can be given. Nurses cannot expect to know the answer to all the patient’s information needs but should know how to prescribe information and signpost patients to the local health information library or other sources of current, accessible and evidence-based information. The concept of information prescriptions was set out in the White Paper ‘Our health, our care our say; a new direction for community services’ (Department of Health, 2006) where (by 2008), everyone who has a long-term need, and their carers, should be given an Information Prescription. An information prescription can be prescribed from the NHS Choices website (NHS Choices, 2012) and either printed out or emailed to the patient.

Being offered a choice is a good thing generally. When it comes to healthcare and the decisions that patients must make, nurses are in an ideal position to give information. As many have said, change is one of the few constants in the NHS. Nurses should accept the informed patient as a culture change and not see it as a threat. If their information is wrong nurses should correct it. If it is correct nurses should discuss it. Involving patients in their care is a team effort and the patient is part of the team.



Deber R B, 1994, Physicians in health care management: 7.The patient-physician partnership: changing roles and the desire for information. Can Med Assoc, 151(2):171-176

Department of Health, 2006, Our health, our care, our say: a new direction for community services: a brief guide. London: Stationery Office

Department of Health, 2010a, Equity and Excellence: Liberating the NHS, London: Stationery Office Department of Health. 2010b, The Handbook to the NHS Constitution, London, Central Office of Information

Greenhalgh T, 2009, Patient and public involvement in chronic illness: beyond the expert patient. BMJ, 338:b49

Henderson S, 2003, Power imbalance between nurses and patients; a potential inhibitor of partnership in care. Journal of Clinical Nursing, 12: 501 – 508

The Information Standard, 2009, The Information Standard – requirements for applicants, Final version 1.0. October 2009. [available at]

Jadad, A R, Gagliari A, 1998, Rating health information on the internet: navigating to knowledge or to Babel. Journal of the American Medical Association 279: 611 – 614 NHS Choices, 2012, Homepage [online] Available at

About Julia Manning

Julia is a social pioneer, writer and campaigner. She studied visual science at City University and became a member of the College of Optometrists in 1991, later specialising in visual impairment and diabetes. During her career in optometry, she lectured at City University, was a visiting clinician at the Royal Free Hospital and worked with Primary Care Trusts. She ran a domiciliary practice across south London and was a Director of the UK Institute of Optometry. Julia formed 20/20Health in 2006. Becoming an expert in digital health solutions, she led on the NHS–USA Veterans’ Health Digital Health Exchange Programme and was co-founder of the Health Tech and You Awards with Axa PPP and the Design Museum. Her research interests are now in harnessing digital to improve personal health, and she is a PhD candidate in Human Computer Interaction (HCI) at UCL. She is also dedicated to creating a sustainable Whole School Wellbeing Community model for schools that builds relationships, discovers assets and develops life skills. She is a member of the Royal Society of Medicine’s Digital Health Council. Julia has shared 2020health's research widely in the media (BBC News, ITV, Channel 5 News, BBC 1′s The Big Questions & Victoria Derbyshire, BBC Radio 4 Today, PM and Woman's Hour, LBC) and has taken part in debates and contributed to BBC’s Newsnight, Panorama, You and Yours and ITV’s The Week.
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