HIE Library Papers

Dr Ray Jones, one of the UK’s pioneers in the development of electronic information systems for patients, reviews his choice of papers from the forthcoming world congress on healthcare informatics.

keywords: informing patients, telemonitoring, information systems design, information systems r&d.

abstract

The triennial world congress on healthcare informatics, Medinfo, now includes many papers about ongoing work relating to new ways of communicating with, and supporting, patients. The author’s personal selection of noteworthy papers include a review of how CHESS (Comprehensive Health Enhancement Support System) has been used by under-served and high-risk populations and the lessons learned over 15 years, an asthma telemonitoring system that tailors advice according to the individual’s self-administered flowmeter readings, various websites and other information for patients and their families, experience of patients with online access to their records, smart homes, and email support groups. The Medinfo congresses always give a useful snapshot of how medical and healthcare informatics is developing. The many submissions on informing patients and patient-participative telemonitoring, for this year’s conference, substantiate this new field within healthcare informatics.

This article is also published in bjhc&im: Br J Healthcare Comput Info Manage 2001; 18(6): 18–20

Medinfo is a triennial world congress for health informatics that will be held in London from 2–5 September, this year. Whilst it may be difficult sometimes to relate to developments across the world when immersed in local and national work, medinfo provides a snapshot of activity worldwide and a useful check to enable you to assess your own work.

This article is a personal preview of some of the papers that will be given. It is in no way comprehensive and specifically looks at some of the work that could be classified as ‘consumer health informatics’ or ‘patient informatics’.

CHESS

One of the ‘star’ presentations for me will be Gustafson and colleagues’ review of work over 15 years with CHESS (Comprehensive Health Enhancement Support System).¹ They consider their findings from numerous good quality studies on the acceptance and use of such systems by high-risk and under-served groups. Positive effects were found from user participation in healthcare, information seeking, social support, negative emotions and breast cancer concerns. These effects were particularly positive among under-served populations. Studies with patients suffering from HIV and coronary artery disease also suggest that CHESS shifts healthcare utilisation to less costly care providers.

The digital divide is as prevalent, if not more so, in the USA as in the UK (it’s just that most ‘technophiles’ ignore it). Only one in four Americans over 55 have computers compared to more than half of younger adults. Two thirds of American cities over 250 000 people have broadband access compared to less than 5% of towns under 10 000. Income, of course, is the biggest divider. Gustafson and colleagues have found that, if offered CHESS, deprived populations will use it just as much as more affluent or younger people. They may, however, use it differently. Don’t miss this presentation — it will summarise many years of research.

The HAT project

Another interesting paper, illustrating the move towards more tailored, individualised information for patients, is the Home Asthma Telemonitoring (HAT) project in Boston.² Finkelstein and colleagues have developed and piloted a system that gives patients continuous individualised help in the daily routine of asthma self-care and notifies heathcare providers if certain clinical conditions occur. The HAT system has been fully implemented in Boston Medical Center. The majority of their patients live in low-income inner-city areas and do not have computers, so the system has been implemented using an electronic flowmeter and a low-cost palmtop in the patient’s home. This links by modem to a central decision-support server and a clinical station. Each HAT-patient session is divided into monitoring, analysis and educational components. The monitoring component interacts with the patient to collect data for the asthma diary (symptom and medication-use questionnaire) and from the flowmeter. The analysis component interprets the received data according to the patient’s asthma action plan and identifies which part of the action plan the patient should follow and which alerts, if any, should be generated. The educational component includes immediate interpretation of the self-testing and asthma information tailored to the current disease status together with more general asthma education. Preliminary results have shown higher patient compliance to asthma action plans compared to patients in standard care. A randomised trial is under way.

Information for patients and family-member carers

A number of papers present systems (either standalone or Web-based) that have been developed (and evaluated) for patients and their families. For example, Chambers and Connor in Northern Ireland evaluated a program designed to provide family-member carers with information, advice and psychological support by way of feedback about their capacity to cope.³ The multimedia program consisted of an information-based package providing carers with advice on health promotion and relaxation and offering them a range of coping strategies (for example, positive self-talk, assertiveness training and relaxation tapes and videos). The evaluation study amongst cared-for people (n=26), family-member carers (n=103), and professional carers (n=113) in Sweden, England, N Ireland, Portugal and the Republic of Ireland, found that users of the program thought it visually pleasant, easily understood, quick to respond and generally met with users’ expectations.

Finland is a small country with high levels of access to and usage of the Internet (63% of Finns have used the Internet). Saarikoski and Kouri from Kuopio developed a maternity and infant-care website,⁴ which was piloted with both professionals and clients. They stress the need not only for such information to be useful and appropriately targeted at consumers, but also known to and approved by professionals in order to reduce conflicts of information given.

Changing behaviour with information requires tailoring

Web pages aimed at patients or the public just provide information, but this does not necessarily change behaviour. Clear objectives of the desired change and information need to be tailored to the user’s knowledge, attitudes, perceptions, and self-efficacy. Another presentation not to be missed is from Kukafaka and colleagues at Columbia University, New York, who discuss how to develop educational content within a behavioural theory framework, illustrated with examples from the MI-HEART project.⁵ The project uses patient-specific information from an electronic medical record to produce educational materials for patients at risk of myocardial infarction. An assessment questionnaire was designed to measure a variety of factors that influence decision-making but which are not contained in the patient’s record. The educational content for this intervention is linked directly to this cognitive model and is tailored to the parameters measured at baseline for each participant in the study.

Patient access to medical records

The same group at Columbia University report on patients at the New York Presbyterian Hospital who, over a nineteen-month period, were able to access their records online.⁶ Patients varied in their use of the system, from once a month or less to one or more times per day. All primarily used the system to review laboratory results. Both they and their physicians believed that use of the system enhanced the patients’ understanding of their conditions and improved their communication with their physicians. There were no adverse events encountered during the study. With only 11 subjects, however, mostly aged 40–64 and regular computer users, it is not clear what generalisations can be made from the study.

Smart homes

There are several papers in the conference programme about home or mobile monitoring. Rialle and colleagues in France have developed and are testing a ‘smart home’ that would enable people, such as the disabled and elderly living alone, the handicapped or patients suffering from chronic diseases to have the autonomy of living at home while benefiting from the support and monitoring of medics and social workers. Although the authors include patients as one of the defined users of the system, in this short paper at least, the emphasis seems to be on the well-intentioned but maybe rather scary ‘Big Brother’ functions.⁷ Matsumoto and colleagues in Japan are working in a similar field, investigating patterns of behaviour within the home in order to build a model of how consumer electronic and other devices are used so that maybe in the future a ‘smart home’ might spot an emergency when it occurrs.⁸

Two papers focus on the telemonitoring of diabetics. Maglaveras and colleagues from Macedonia have experimented with wireless applications for this purpose.⁹ In particular, they have prototyped and pilot-tested an application for patients with diabetes. The patients submitted the values of some basic measurements that were taken at home, together with some simple yes/no responses to a few questions, via a WAP-enabled device (mobile phone, PDA) to a central server. A session typically took about three minutes. The data was automatically checked for validity and stored in a database to be subsequently viewed by the doctor and stored in the electronic healthcare record. The patient was contacted if necessary. The written paper gives few details of the evaluation of results, so it would be worth hearing this presentation to find out more. The other paper comes from Sweden where Lind and colleagues discuss the prototyping of a home-use application based on emerging Java technologies.¹⁰ They too propose to develop a system for diabetics but, as far as I can tell, the system has yet to be realised.

Email and other support

There are at least two papers examining the use of email. Yamakami and colleagues at Shinshu University Hospital have been experimenting with the use of email and live video links for hospitalised children to communicate with other children or their schools. The authors report some evidence of acceptability to the children.¹¹

The Association of Cancer On-line Resources provides support to more than 30 000 patients, family members, and caregivers through 70 online resources. Han has examined the use of three of these (N-BLASTOMA, PED-ALL, and PED-ONC.25).¹² More than 100 messages per day about diagnosis, self-care skills, life stories, encouragement, current condition of the children, and general issues (eg fund-raising activities, humour and requests for specific medical information) are posted each day to these lists. Seventy-three parents (55 mothers and 18 fathers) of children volunteered to complete an email survey. Most were Caucasian, well-educated and with relatively high incomes. The perceived benefits of the online support group involvement were getting information, sharing experiences, general support, venting of feelings, accessibility, and the use of writing. The disadvantages included ‘noise’, negative emotions, large volume of mail, and the lack of physical contact and proximity.

Conclusions

This partial review provides just a glimpse of some of the many papers that will be presented at medinfo2001. A quick comparison with Medinfo1989 shows just how much things have changed over the last decade. Then, most papers were on hospital systems, imaging, and signal analysis with virtually no papers on patient or consumer health informatics.

Dr Ray Jones, Senior Lecturer in Health Informatics, University of Glasgow

References

All papers will be published in the medinfo2001 proceedings (in press).

1. Gustafson DH, Hawkins R, Boberg E, McTavish F, Owens B, Wise M, et al. CHESS: fifteen years of research and development in consumer health informatics.
2. Finkelstein J, O’Connor G, Friedman RH. Development and implementation of the home asthma telemonitoring (HAT) system to facilitate asthma self-care.
3. Chambers M, Connor S. Technology as an aid to coping with caring: a usability evaluation of a telematics intervention.
4. Saarikoski S, Kouri P. The evaluation of the maternity and infant clinic on the Net.
5. Kukafka R, Lussier YA, Patel VL, Cimino JJ. Developing tailored theory-based educational content for Web applications: illustrations from the MI-HEART project.
6. Cimino JJ, Patel VL, Kushniruk AW. What do patients do with access to their medical records?
7. Rialle V, Noury N, Hervé T. An experimental health smart home and its distributed Internet-based information and communication system: first steps of a research project.
8. Matsumoto T, Shimada Y, Shibasato K, Ohtsuka H, Kawaji S. Developing of human behaviour model at home and its application.
9. Maglaveras N, Koutkias V, Meletiadis S, Chouvarda I, Balas EA. The role of wireless technology in home care delivery.
10. Lind L, Sundvall E, Åhlfeldt H.Experiences from development of home healthcare applications based on emerging Java technology.
11. Yamakami H, Harada Y, Murase S, Higashiabara Y, Hirokawa H. Successful application of information network designed to support care and education of hospitalised children.
12. Han H. Using online to provide information and support to parents of children with cancer — an exploratory study.