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 Manning is a social pioneer, writer, campaigner and commentator. Formerly a clinical optometrist specialising in diabetes and visual impairment, she is the founder and Director of 2020health, an independent, social enterprise Think Tank whose aim is to Make Health Personal and Social. 2020health has through research, events and campaigning influenced opinion and action in fields as diverse as bioethics, alcohol, emerging technologies, fraud, education, consumer technology and vaccination. In 2014, 2020health were founding partners of the Health Tech and You Awards with Axa PPP and the Design Museum. Since 2016, 2020health has increasingly focused on digital health and public health in the community. Julia is a Fellow of the RSA and now also a part-time PhD student at the UCL Interaction Centre, studying the use of digital technology for stress management in the workplace. 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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