Improving the quality of health information: the contribution of C‐H‐i‐Q

Abstract

The quality of information should be the key driver in communicating health messages to the public. Staff at The Centre for Health Information Quality (C‐H‐i‐Q) have worked with an extensive list of partner organizations from a range of disciplines. These stakeholders express a desire to see improvement in the standards of patient information, and display a willingness to embrace new approaches in order to achieve change. The result is an increasingly significant contribution in the development of the information‐exchange model of health‐care, where the aim is to maximize public confidence in health information. Key activities include defining principles of quality assurance, engaging with stakeholders, and developing tools and training for producers and providers of health information.

Introduction

The UK's Centre for Health Information Quality (C‐H‐i‐Q¹) was launched in 1997 by the Minister of State for Health, as ‘an expert resource for NHS staff and patient representative groups seeking to produce or procure high quality patient information resources’.²

Over the subsequent 5 years, key national documents such as the NHS Plan³ have stressed the importance of communicating well with patients and their families. Recommendation 8 of the Bristol Inquiry [see Appendix I] calls for the development of a system for accrediting patient information materials.

This article reflects on key C‐H‐i‐Q activities to date, aiming to meet these national objectives. C‐H‐i‐Q is based at The Help for Health Trust, an independent charity, recognized internationally as a lead organization in the field of consumer health information.

Principles of quality

Based on the findings of extensive consultation and research through key partner organizations, C‐H‐i‐Q identified three over‐arching themes, defining good quality consumer health information as that which:

• • is evidence‐based
• • is clearly communicated
• • has the consumer involved in production.

NHS and other patient organizations engage and work with C‐H‐i‐Q to ensure these issues are fully addressed within the production and dissemination of health information for the public.

Engaging with stakeholders: an open access service

Producers and providers of health information contact C‐H‐i‐Q, either through telephone ande‐mail enquiries, or by visiting C‐H‐i‐Q in Winchester. Two databases were originally developed to support this service: Consumer Health Information Literature (CHILI) and Patient Information Projects Exchange Register (PIPER). These databases were used to refer enquirers to key research articles and projects. The Internet has rapidly become the primary source for enquiries, and as a result CHILI and PIPER have been replaced with online resources, including HiQuality (see below), which receives more than 3000 visitors per month. C‐H‐i‐Q news items and Topic Bulletins are available from C‐H‐i‐Q's main website (http://www.hfht.org/chiq). The Topic Bulletins consider the principles of quality assurance in detail.

Quality tools and appraisal processes

Key quality assessment tools were developed with input from C‐H‐i‐Q, including the DISCERN tool⁴ led by the Oxford Health Services Research Unit, and the King's Fund's POPPI Guide⁵. Subsequently, C‐H‐i‐Q produced guidelines⁶ for assessing and producing information. Other resources include Quick (http://www.quick.org.uk, for children, developed with the then Health Education Authority), and HiQuality, both online educational tools. These resources continue to be maintained, with further content added.

There are two types of appraisal of health information. In the ‘archaeological’ approach, information is tested against quality criteria once it has been published. In the ‘architectural’ approach, assessment is based on research and editorial processes adopted from the outset of production of the information. In both approaches, appraisal is carried out by an appropriately trained and experienced assessor.

Training

A short course ‘Producing high quality consumer health information’ has been developed and piloted by C‐H‐i‐Q, aimed at those who are new to health information and/or the NHS. This workshop has a considerable focus on the practical application of C‐H‐i‐Q guidelines. More than 100 trainees attended this during its first year.

Patient Advice and Liaison Services (PALS) are rapidly emerging within the NHS, as a ‘front‐of‐house’ information service. Workshops have been developed and piloted with PALS staff to facilitate the link between policy and good practice, with a key focus on issues around information quality. These workshops will undergo further piloting and evaluation.

Health information on the internet

For the first time, a national database linking users to tested patient information became available, and was immediately the most popular resource on NHS Direct Online (http://www.nhsdirect.nhs.uk), when it was launched by the Prime Minister in December 1999. Hundreds of patient information leaflets were tested retrospectively, using the DISCERN tool. Trained appraisers gave the leaflets a star‐rating, and these formed the majority of content for NHS Direct Online's database ‘Conditions and Treatments’.

Public versions of clinical guidelines

In 2000, public versions of national clinical guidelines were developed as part of a key programme for the National Institute for Clinical Excellence (NICE). This ensured that patients had access to accredited information, developed in parallel with the version for health professionals.

Health information through digital television

Based on the architectural approach, a quality assurance programme was devised and implemented across all public‐facing NHS digital TV pilot services^7,8 for a project led by the Economics and Operational Research Division, Department of Health. This ensured all the pilot services were adopting the same dedicated and agreed standards from the outset. As a result, users of the interactive services would know that mechanisms were in place to ensure:

• • Sources of information were clear to the viewer
• • Accuracy of information was regularly reviewed
• • Consumers were involved in the development of the service.

A simple framework for quality assurance emerged from this, easily transferable into any information services environment, and comprising three phases:

• 1Development of standards – developed and agreed by a group of stakeholders, including appropriate consumer representation.
• 2Training and support for staff – ensuring health information appraisal skills were available within production teams.
• 3Monitoring progress towards the standards – to ensure standards were being adopted and developed, taking into account, for example, feedback from trainees.

The next steps

The NHS Information Policy Unit is currently commissioning C‐H‐i‐Q to produce reports and guidelines on work to date, and to develop and pilot further quality assurance tools and frameworks for a range of health service environments.

Stakeholder organizations contributed to the design of this C‐H‐i‐Q work programme for theNHS. These include the NHS University, the Health Development Agency and NHS Direct Online. These activities include:

• • Evaluation of the C‐H‐i‐Q training workshops held to date
• • Further development of patient information standards for the NHS
• • Further development and piloting of training for PALS leads
• • Designing quality assurance models for the new services:
• 5  ○ NHS National Cancer Information Coalition
• 6  ○ National Patient Safety Agency [http://www.npsa.org.uk]
• • Developing a web resource guiding NHS staff to relevant information training services
• • Marketing C‐H‐i‐Q services and further developing partnerships with relevant organizations.

Appendix 1. Key references

Bristol Royal Infirmary Inquiry (2001)⁹

‘The NHS … should make the improvement of the quality of information for patients a priority … identify and promote good practice throughout the NHS … establish a system for accrediting materials intended to inform patients.’

Patient and public involvement in the new NHS (1999)¹⁰

C‐H‐i‐Q functions as ‘an information clearing house on all aspects of patient information, providing practical advice to the NHS and others on the production of good quality information for patients’ (NHSE).

Information for Health (1998)¹¹

• • ‘The role of the Centre for Health InformationQuality will … play a stronger role in accrediting patient and public information material …’

• • ‘The intention is to develop the capacity of C‐H‐i‐Q over the next few years to achieve a greater impact on health and health services provided by the NHS.’

• • ‘The NeLH should take account of the work of C‐H‐i‐Q … in the assessment and accreditation of on‐line information resources.’