Radiotherapy patients information:
Is a new approach needed? Sarah James, Alison Stemp
Is the duplication of materials causing cancer patients to experience information overload whilst maintaining a system of waste?
P
atients need to be accurately informed to help them understand their cancer diagnosis and its management, to empower them to participate in shared decision-making and provide informed consent for their treatments and care. Up-to-date, understandable, accessible and timely information
is critical in helping patients with cancer prepare for their forthcoming treatments; manage both their physical and emotional side-effects; and equip them for their ongoing journey into survivorship1 policy2
and national guidance3 patient-centred care, with the overall aim of providing them with a positive experience4 . Government
are focused on giving patients control of their health, as part of providing .
In recent years there have been a variety of initiatives aimed at driving quality improvements in information services. These include
• The implementation of the Information Standard (IS)5 processes and resources;
to improve the quality of information production • The implementation of the Information Prescription Service (IPS)6 to drive improvements in information
delivery by enhancing accessibility to both relevant and timely resources. The aim of this system is to offer a single website portal, for approved information producers to upload their resources in a systematic and accessible way for users, including patients, carers and healthcare professionals.
In addition, more recently there has been a proposal to mandate the implementation of an Accessible Information Standard7
. This was out for consultation during the latter part of 2014. It is a standard that
aims to drive improvements in accessibility for all users in both health and social services, to ensure all patients, clients and carers are given information in the most appropriate format to meet their personal needs. These needs may arise from learning difficulties and/or physical disabilities or sensory
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Inconsistencies and unnecessary duplication are inevitable
impairment. This standard would apply to all communications with patients, including, for example, notification of appointments.
The development of the Accessible Information Standard has been creating concern amongst the ‘information community’ as, at the time of writing, it seems likely to overlap significantly with the remit of the already established IS8
and appears to be yet another source of duplication and burden to already
pressurised health information providers. Current plans are for implementation sometime during 2015, with a year's grace for services to reach compliance.
Where are we now? Although both the Cancer Patient Experience Survey9 Survey10,11
and the National Radiotherapy Patient Experience highlighted many positive findings regarding provision of information, there were
inconsistencies identified in the provision across the whole of the cancer patients’ journey and some aspects of the radiotherapy element in particular. Arguably, the current level of information provision already requires a significant commitment of manpower resources. Many individual cancer centres produce their own dedicated information through a supporting team of expert professionals. This is intensive and may duplicate existing national material. Other cancer centres without such a team, seem
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