Effect of different forms of information produced for cancer patients on their use of the information, social support, and anxiety: randomised trial.

OBJECTIVE: To explore the hypothesis that different methods of selecting and printing information for cancer patients could improve emotional support by affecting interaction with others, and so lead to improved psychological wellbeing. DESIGN: Randomised trial with eight groups (three factors, 2x2x2). Data collected at recruitment and three month follow-up. PARTICIPANTS: 400 patients starting radiotherapy, of whom 325 with breast or prostate cancer and complete anxiety and depression data were included in the analysis. INTERVENTIONS: Printed booklets: half had only general information from CancerBACUP about each patient's cancer and half had personalised information from the patient's medical record plus selected general information; half were composed of information chosen interactively by the patient and half were produced automatically with a larger volume of material; and half had additional advice on anxiety management and half did not. MAIN OUTCOME MEASURES: Patients' views of the information, use of their booklets with others; change in reported social support; change in anxiety and depression. RESULTS: The larger booklets produced automatically were more likely to be found useful and to tell patients something new and less likely to be seen as too limited than the booklets produced interactively, but they were also more likely to overwhelm some patients. Personalised booklets were more likely than general booklets to tell patients something new. There was no difference in patients' perceived understanding of their cancer by any of the intervention factors. Patients with personalised information were more likely to show their booklets to others and to think it helped in discussing their cancer or its treatment. There were no major differences in social support, anxiety, or depression by any intervention factors. CONCLUSIONS: Patients were more likely to show personalised information to their confidants than general information. Further research is needed into the effects of sharing information on patients' social support and anxiety. Trial registration US Government Clinical Trials Database NCT00127465.

The accessibility of computer-based health information for patients: kiosks and the web.

The Internet is a rich source of health information but it is not as accessible as many claim. This paper brings together three projects to illustrate technical and cost barriers and some options to overcome them. (1) A survey amongst a representative sample of 180 patients in rural Spain showed a marked age gradient in computer access. None over the age of 50 had, and less than 10% planned, access to the Internet whereas a quarter were prepared to use health centre based touchscreen kiosks. (2) Half the commonly used search engines did not include the two most relevant websites for Glasgow colorectal cancer patients in the first ten documents listed, showing the difficulty facing patients in finding relevant information. Selection of information would help patients avoid being overwhelmed with information. (3) One method to improve accessibility is to download websites to kiosks but two projects showed that considerable work is required to reformat the information. Public access computing, such as kiosks, could help make the Internet more accessible. We discuss whether Web sites which structure their information according to method of access, place and person provide a way forward.

The accessibility of information systems for patients: use of touchscreen information systems by 345 patients with cancer in Scotland.

AIM: To examine cancer patients' use, and satisfaction with touchscreen information systems. By examining the experience of subgroups, to address issues of equality of access. PATIENTS: 345 patients starting radiotherapy at the Beatson Oncology Centre (BOC), Glasgow. METHODS: Patients were invited to use a touchscreen computer at the start of treatment. They were sent a printout of what they saw on screen. Patients had open access to the system. Data were collected at recruitment, intervention, 3 weeks and 3 months. Predictor variables included: patients' demographics, information preferences, technology use, and psychological state. Outcome variables included: use and views of the computer and printout. RESULTS: Younger, broadsheet readers with previous computer use were more likely to find the system easy to use. Older, tabloid readers were more likely to find the content new and relevant. DISCUSSION: We need to make systems adapt to users' different needs. More effort should be made to provide affordable information for older, generally less literate and technologically less literate groups in suitable locations.

Randomised trial of personalised computer based information for cancer patients.

OBJECTIVE: To compare the use and effect of a computer based information system for cancer patients that is personalised using each patient's medical record with a system providing only general information and with information provided in booklets. DESIGN: Randomised trial with three groups. Data collected at start of radiotherapy, one week later (when information provided), three weeks later, and three months later. PARTICIPANTS: 525 patients started radical radiotherapy; 438 completed follow up. INTERVENTIONS: Two groups were offered information via computer (personalised or general information, or both) with open access to computer thereafter; the third group was offered a selection of information booklets. OUTCOMES: Patients' views and preferences, use of computer and information, and psychological status; doctors' perceptions; cost of interventions. RESULTS: More patients offered the personalised information said that they had learnt something new, thought the information was relevant, used the computer again, and showed their computer printouts to others. There were no major differences in doctors' perceptions of patients. More of the general computer group were anxious at three months. With an electronic patient record system, in the long run the personalised information system would cost no more than the general system. Full access to booklets cost twice as much as the general system. CONCLUSIONS: Patients preferred computer systems that provided information from their medical records to systems that just provided general information. This has implications for the design and implementation of electronic patient record systems and reliance on general sources of patient information.

Patient information systems that tailor to the individual.

The potential of computers in patient education has been well described by Skinner et al. One of their recommendations was for more personalized systems. In this article we discuss how computer-based patient information systems can provide material that is tailored to the individual, giving a number of examples of systems developed in Scotland. We review some of the techniques used in developing tailored systems, and consider the evidence to date as to their efficacy.

Natural language generation in health care.

Good communication is vital in health care, both among health care professionals, and between health care professionals and their patients. And well-written documents, describing and/or explaining the information in structured databases may be easier to comprehend, more edifying, and even more convincing than the structured data, even when presented in tabular or graphic form. Documents may be automatically generated from structured data, using techniques from the field of natural language generation. These techniques are concerned with how the content, organization and language used in a document can be dynamically selected, depending on the audience and context. They have been used to generate health education materials, explanations and critiques in decision support systems, and medical reports and progress notes.

Information for patients with cancer. Does personalization make a difference? Pilot study results and randomised trial in progress.

Although there are a number of groups working on the provision of personalized patient information there has been little evaluation. We have developed and piloted a method of giving patients on-line access to their own medical records with associated explanations. We are comparing, in a randomised trial, personalized with general computer based information for patients undergoing radiotherapy for cancer. We present results from the pilot study and the evaluation methods to be employed.