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Patient information: Part 1. Why provide information?

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Mark Duman, MRPharmS; Amanda Clark, MA, RN.

Mark-Freelance Health Communications Consultant; Amanda-Professional Nurse Editorial Advisory Board Member.

By putting the public at the centre of the modernisation of the NHS, the Government needs organisations at every level to establish effective working partnerships with service users. One of the aims of the Patient Partnership Strategy launched in 1996 (NHS Executive, 1996) was to enable patients to become informed about their treatment and care and to be able to make informed decisions and choices about it if they wish. This was reaffirmed in the revised document published in 1999, Patient and Public Involvement in the New NHS (DoH, 1999). This reaffirmed that producing accurate and up-to-date information is essential if the ideals later laid down in The NHS Plan (DoH, 2000) are to be achieved.
By putting the public at the centre of the modernisation of the NHS, the Government needs organisations at every level to establish effective working partnerships with service users. One of the aims of the Patient Partnership Strategy launched in 1996 (NHS Executive, 1996) was to enable patients to become informed about their treatment and care and to be able to make informed decisions and choices about it if they wish. This was reaffirmed in the revised document published in 1999, Patient and Public Involvement in the New NHS (DoH, 1999). This reaffirmed that producing accurate and up-to-date information is essential if the ideals later laid down in The NHS Plan (DoH, 2000) are to be achieved.


This series of five papers, based on Producing Patient Information (King's Fund, 2003) will provide an overview for anyone interested in producing patient information following the process map shown in Figure 1. Box 1 lists the topics covered in this series.


This first article will look at the reasons why we should provide patients with information. Policy initiatives that support the need for the provision of high-quality information will also be discussed.


Why provide information for patients?
Most health professionals do not need convincing that providing patients with high-quality information is a key part of their role and one that has huge benefits for their patients. However, there may well be people in both clinical and non-clinical positions who would argue that producing patient information is not a worthwhile use of often scarce resources. For those of you who may need to convince managers or other clinicians of the worthiness of your information project, there is an increasing body of evidence that shows that patients benefit from being well informed (Coulter et al, 1998). The document Informing Patients (Coulter et al, 1998) produced by the King's Fund cites the following reasons for providing patients with information, to:


- Understand what is wrong


- Gain a realistic idea of prognosis


- Make the most of consultations


- Understand the process and likely outcomes of possible tests and treatments


- Assist in self-care


- Provide reassurance and help to cope


- Help others understand


- Legitimise help-seeking and concerns


- Identify further information and self-help groups


- Identify the 'best' health-care provider.


Organisations and patients
Since the publication of The NHS Plan in 2000 it has been clear to those working in health care that involving the public in the development of services is a key aim of the present government. The majority of NHS bodies throughout England and Wales now have a mandate to involve the public in the way they operate. An example of this can be found at the National Institute for Clinical Excellence (NICE), which has sought to reflect public opinion within the guidance it publishes by recruiting members of the public to a Citizen's Council. The NHS Information Authority (NHSIA) has also made steps to involve the public and now has a database of nearly 500 patients, carers and citizens who are willing to provide input in order to inform the improvement of existing services and the development of new ones. The main point being that for any of these patients and service users to be able to participate effectively in the operation of these organisations they need to be informed.


Other key policy developments that support the need for the provision of information include the introduction of Patient Advice and Liaison Services (PALS). One of the key responsibilities of PALS is 'to provide accurate information to patients, families and carers, about the trust's services and other health-related issues, using accredited reliable sources' (DoH, 2002).


Information and choice also feature strongly in the standards set by National Service Frameworks (www.doh.gov.uk/nsf) and the Cancer Information Strategy (www.doh.gov.uk/ cancer/cis.htm).


The outline of an information strategy for the NHS between 1998 and 2005 was provided in the policy document Information for Health, issued in September 1998 (available at: www.nhsia.nhs.uk/def/pages/info4health/5.asp) (NHS Information Authority, 2001). This strategy aims to ensure that professionals have the information they need to provide effective and high-quality care and that patients and carers have the information they need to make informed decisions about their health. The role of the Centre for Health Information Quality (CHIQ) is also discussed in the strategy. CHIQ works with those who produce patient information to improve quality, accessibility and its evidence base.


Conclusion
As this short paper has shown, there are both strategic and political reasons for providing patients with information. Both of these can be used to persuade and influence the decision-makers when embarking on a project to produce patient information. However, we must not forget that at the centre of this are patients and carers who have been shown to benefit a great deal from the provision of high-quality information.


The remaining papers in this series will look at the production and evaluation processes involved.


- Mark Duman is the author of Producing Patient Information: How to research, develop and produce effective information resources (King's Fund, 2003), on which this series of articles is based. The book offers a step-by-step guide to each stage of the information process, from developing an information policy, to writing and disseminating print and electronic materials. For more details see: www.kingsfundbookshop.org.uk You can contact the author at: mark_duman@yahoo.co.uk

Coulter, A, Entwhistle V, Gilbert, D (1998) Informing Patients: An assessment of the quality of patient information materials. London: King's Fund.

Department of Health. (1999) Patient and Public Involvement in the New NHS. London: The Stationery Office.

Department of Health. (2000) The NHS Plan. London: The Stationery Office.

Department of Health. (2002) Supporting the Implementation of Patient Advice and Liaison Services (PALS). London: The Stationery Office.

King's Fund. (2003) Producing Patient information: How to research, develop and produce effective information resources. London: King's Fund.

NHS Information Authority(2001) Information for Health - 5. Meeting public and patients' needs. Available at: www.nhsia.nhs.uk/def/pages/info4health/5.asp

NHS Executive. (1996) Patient Partnerships: Building a collaborative strategy. Leeds: NHSE.
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