A user-centred approach to patient information

Researchers investigate the design of patient information for medical investigations and tests.

The patient journey is defined by information and usually follows sequential stages, often referred to as ‘clinical pathways’, which seek to optimise outcomes for patients whilst improving efficiency for healthcare professionals and healthcare providers. During such stages, patients may experience anxiety due to uncertainty, fear due to invasive medical investigations, and embarrassment and pain due to personal exposure and physical discomfort felt during investigations. Information can be valuable to inform and support patients and to positively affect their experiences. Understanding the value of patient information and how best to design and provide information that meets patients’ needs and preferences was the focus of David Keane’s PhD research with MATCH at The University of Nottingham.

A user-centred approach to the patient journey was taken and studies were designed to evoke emotional, psychological and social responses from participants to medical investigations and tests in the context of screening and diagnostic healthcare situations. The value of patient information in the situations was also examined.

The user-centred approach was qualitatively driven, eliciting informational needs and preferences and establishing factors affecting attitudes. Examples of these factors include ‘benefits’ (benefits of being screened), ‘purpose’ (purpose of an investigation or test in response to symptoms) and ‘sensations’ (perceived pain and discomfort during investigations and tests, and the use of alleviating substances).
Respecting patient values and preferences is the basis for the ‘no decision about me without me’ policy in healthcare. Patient information is seen as essential to this policy. The factors approach enabled an understanding of what patients would consider in screening and diagnostic healthcare situations if they had the option of, or required, a medical investigation or test. This understanding was recognised as a potential approach to the design of patient information with two benefits.
Firstly, a ‘factors based approach’ to the design of patient information could facilitate patient engagement with, and retention of, information and aid decision-making, and secondly, it would contribute to the creation of guidelines to assist designers in the development of patient information.
The factors-based approach to the design of patient information was examined for an invasive medical investigation and compared to information that is currently available and provided to patients for the investigation. Qualitative findings revealed the factors approach was looked upon favourably by most participants because its information structure was preferred and information navigation was improved. Participants perceived the information to be clearer and quicker to navigate, read and understand. Quantitative findings supported the qualitative findings with respect to satisfaction with, and retention of, information.

Patient information guidelines are available for packaging and package leaflets for medicinal products and for assessing decision support technologies. However, none are available to a similar standard that can be used and applied for the design of patient information for medical investigations and tests. The factors based approach demonstrated its potential benefit to the design of patient information itself as well as to the development of guidelines for design. Work is currently underway that will see these guidelines produced and publicly accessible to assist patient information designers and others involved in patient information.

By David Keane, Michael Craven & Sarah Sharples

This article first appeared in The Ergonomist, No 524 February 2014