Peggy Gregory and Donal Flynn
We present a discussion of issues arising from a case study of a web-based diabetes system used by patients and health-care practitioners in a GP surgery in north-west England. The study ran over 18 months in a GP surgery during which 38 diabetic patients each used a web-based system for 6 months. The system enabled participants to upload their blood glucose readings to a password protected website and share the results with their GP and the practice nurse. It also enabled patients to communicate with the nurse and GP; to post to a discussion board shared with other users of the system; to read regularly updated news and information pages about diabetes and to join a diet and exercise email system. The case study used mixed methods, gathering both qualitative and quantitative data. Factors of interest were use and non-use patterns, behaviour and attitude changes and experiences of those who participated.
The two parts of the system that participants reported as being of most interest were the blood glucose upload feature and the communication features. The blood glucose upload feature was valued by the participants who used it because it allowed them to view graphs of their results and find patterns in the readings, and it also allowed the practise nurse to see their readings and make comments on them. The communication features of the system were of particular interest to participants, especially the discussion pages and the messaging facility. The discussion board was the most used part of the website and participants reported that the experience was useful in terms of learning, sharing and also in providing a sense of not being alone. Issues of trust and data security on the Internet were discussed with patients. Finding a set of trusted electronic sources of information about diabetes was reported by many patients to be important whereas few were concerned about data security when transmitting health data over the Internet.
An interesting feature of system use was that many of the more engaged users were those whose attitude towards their diabetes was positive when the study started. Most patients who were struggling to accept and control their diabetes did not use the system very much, and although many of these patients showed evidence of shifts in attitude and behaviour during the project, the existence of the system did not in itself encourage them to become significantly more engaged in their diabetes care.
Five categories of use characteristics were identified: ‘frequent users’, ‘regular users’, ‘occasional users’, ‘minimal users’ and ‘non users’. Most users were either ‘regular’ or ‘occasional’ with fewer ‘frequent’ and ‘minimal’ users. However there were also a significant number of ‘non users’. Consistent reasons explaining use patterns were difficult to find, but those in the ‘minimal’ or ‘non user’ groups were more likely to experience one of the following: difficulty accepting their diabetes, technical problems that couldn’t be solved or health and personal problems that made participation difficult. Those who fell into the ‘frequent’ or ‘regular’ user groups were more likely to be accepting of their diabetes and to use their computers regularly for purposes other than just the diabetes system.
The social implications of the introduction of such systems are wide-ranging. There are possibilities for new ways of supporting and communicating with patients through electronic media. These systems can provide ways for patients to become more active in their own disease management. Previous work on self-management has shown that patients who take more responsibility for their health care have better health outcomes (Lorig et al. 2001). Such systems can also enable patients to engage with a range of healthcare practitioners asynchronously in a way that provides a more continuous level of support than is currently experienced by most patients with chronic diseases (Goldberg et al. 2003). As well as communication with professionals, electronic media can provide ways in which patients can communicate with each other and that can help to develop a sense of being supported by a community. The discussion board in our case study was private to the group of diabetic patients using it and a number of participants mentioned how useful it was to be able to share experiences with other diabetics. Such support can be particularly helpful for patients with chronic diseases because of the need to keep on track over a long period of time and through a number of different disease phases.
There are however a number of potential problems that a more widespread introduction of such systems would raise. Some patients would be unable to use computerised systems because of a lack of access to the required technology or because of physical or mental health problems. There is a danger that the introduction of such systems may further entrench the division between those who can access health care successfully and those who cannot. The availability of smaller, possibly freely available, devices would not necessarily alleviate this problem because they would not be easy to use by older patients or those with sight problems. Also, as evidenced by our study, the fact that such systems are available does not mean that they will be used. The technical system is not in itself a solution to the problems faced by diabetic patients but is a tool that can be used to the benefit of patients if they choose to engage with it. There is still a need for other systems to work in concert with technical systems to support the engagement process. It seems almost inevitable that technical patient support systems will gradually become more available for users, and as a part of this growth the issues of division, exclusion, non-use and ease-of-use need to be addressed.
Lorig, K.R.; Sobel, D.S.; Ritter, P.L.; Laurent, D.; Hobbs, M. (2001) “Effect of a Self-Management Program on Patients with Chronic Disease.” Effective Clinical Practice, 4(6), pp. 256-262
Goldberg, H. I.; Ralston, J.D.; Hirsch, I. B.; Hoath, J.I.; Ahmed, K.I. (2003). “Using an internet comanagement module to improve the quality of chronic disease care.” Joint Commission Journal on Quality and Safety, 29(9) Sept 2003.