ABSTRACT
In many areas of health care, professionals rely on patients or their relatives to provide information about medical history. Accurate information is vital for the safety and effectiveness of clinical decision making but many people struggle to provide this (for example because they are unconscious, have forgotten, or do not know or understand what information to provide). Although it has been suggested that patients taking responsibility for their records could improve patient safety (Hall, 2007), little is known about the UK public’s attitudes towards this or what the design and requirements of such a system would be. The study reported here is part of a wider Engineering and Physical Sciences Research Council funded project with City University to develop a patient held health record device which takes into account the requirements of the public and health care professionals. It will act independently of health service initiatives, being kept, carried and updated by the patient. This paper focuses on the first stage of the project, a survey undertaken to
understand attitudes towards, and requirements for, such a device. The information will be used by product and software designers to create solutions which meet user requirements and acceptance criteria. Previous studies, such as Ross et al. (2005) have pointed to the interest of patients
in having certain types of information available for privileged access. However, Pyper et al. (2004) highlighted concerns that unauthorised peoplemight gain access
to electronic records. These, coupled with worries about surveillance might mean that regardless of the benefits of such a system, it may not be accepted by the UK public. Additionally, there has been a lack of consensus about the types of information that should be entered, access rights, the design of the device, and input and display requirements. Electronic patient held record systems are currently used in many countries and
many of these use smart cards. They are used as combined ID/health cards in Malaysia and Germany (Frontier Strategies, 2001). In the USA, devices being used include USB or memory sticks such as MEDeCARD and dog tags for the military (Burnham, 2000). In the UK a pilot study was conducted between 1989-1992 in Exmouth,
where13,000 smart cards were used by patients (NHS Management Executive, 1990). Patients were able to restrict the information contained on the cards, but provision was made to include health care professional identifiers, ethnic group, language spoken, religion, medication details, allergies/drug sensitivities, donor status, emergency information, symptoms, examination findings, laboratory information, tests and measurements, diagnostic information, employment details and administrative data.Access to the informationwas available to health professionals. The main result of the trial was that the patients liked the concept of an electronic patient-held card and also suggested that more information should be included on the cards. The study was not continued, with the availability of technology at the time limiting its wider feasibility. The survey outlined belowwas undertakenwith the aim of collecting information
from theUKpublic about support for patient-held records, potential barriers to their use, the sort of information that should be held on a patient held health record, access rights and the user requirements for a device.
