Six key themes, some with subthemes, were identified from the data and are described in detail below:
- communication between patients and health professionals
- presentation of patient data and permanency of the record
- the importance and value of peer support
- awareness of the personal nature of diabetes
- how an Internet-based system would fit with the current provision of care
- an Internet-based system may not be suitable for all people with diabetes
Communication Between Patients and Health Professionals
The facility to send and receive secure messages through an Internet-based system was largely welcomed by all the stakeholder groups consulted, although there were some concerns. For health professionals, one of the key benefits was that the means through which they communicated with their patients outside of their face-to-face appointments would be more standardized. Having an asynchronous messaging system was seen to be beneficial as both parties could check their messages when it was convenient for them and fit this into their other activities, thereby saving a lot of time. This concurs with previous research [16
]. For example, one health professional (HP) illustrated the time taken in trying to respond to a patient enquiry that had been left on the clinic answer phone:
HP6: I rang somebody and she said, “I’m right in the middle of shopping in [town]. Can you ring me back?” So, there’s a lot of time that you spend sort of ringing them. Or, I’ve got a school teacher, and she’s rang four times today and I have rang her back several times, and you know eventually [that] you get to talk but it might be a couple of days, so I think quite a lot of our patients feel that it’s easier to email us.
Similarly, a focus group participant (FGP) explained how she had largely given up trying to seek advice through the clinic helpline as she found having to leave a message and waiting to be called back simply unworkable:
FGP3: It’s so hard.... You have to leave a message, they ring you back, you’re in an open office so you can’t talk, so you just bash your way through it and hope it’s going to come out right at the end.
Being able to send a message and receive a reply was therefore welcomed by patients, so long as the system was adequately supported and health professionals responded to messages in a timely manner [18
]. There were potential concerns raised by some health professionals that the number of patient contacts would increase and that the workload of the consultants would similarly increase since most patient messages had previously been filtered by the specialist nurses. These were fairly minor concerns though and did not outweigh the perceived benefits.
Presentation of Patient Data and Permanency of the Record
One of the key advantages of the proposed Internet-based system identified by health professionals was the benefit of having ready access to a patient’s blood glucose readings. The advantages were two-fold: (1) having up-to-date results readily accessible, and (2) having results in a standard format. At present, health professionals were often faced with results in various formats:
HP2: Some of them [records kept by patients] might be too scribbled and not really very clear.... But, yes, scraps of paper might have, sometimes, [the time of day]...written in the corner, and you’re trying to see the time of the day and sort of trying to make them in your head into [a] date profile to some extent. So, they can be a bit difficult, yes.
The permanency of the record was also seen as beneficial by health professionals since, in contrast to a paper diary, the readings would not leave with the patient and would still be available for review and reflection at a later date. The potential for use as a teaching and training tool was also raised. In contrast, patients were more divided on the benefits of uploading their results. Those who found recording their readings problematic welcomed anything that would make it easier and more convenient, but for others the system was seen to offer nothing new. However, all patients recognized the benefit of the health professional having access to their readings when dealing with queries.
The Importance and Value of Peer Support
In common with other research [5
], one of the most valuable elements of the system identified by patients, and also recognized by health professionals, was peer-to-peer support. Patients in particular identified two key ways in which such support would be useful. First, being able to pick up tips and suggestions for managing their diabetes was viewed as beneficial, even for those who had had diabetes for some time:
FGP6: But there are so many things that you can come across for the first time, and the one I had to seek advice on was the flu injection last year, which caused chaos, and I thought, “Well, is this the flu injection or is there something else that I’m missing?”.... But again, a [discussion] board like this, just to push the question in and see what response you get back...
Second, being able to communicate with someone who understood what they were going through was considered very valuable by patients, particularly for those who did not know others with diabetes, thereby demonstrating the potential of Internet-based communication to move beyond the individual’s usual sphere of contacts.
FGP9: Within my life, around work, around home, and around socializing, I know no one else with diabetes, so to be able to get on...[the] Internet and sort of like to be able to have a chat with somebody... Even like you say, sometimes it might just be for a moan, but sometimes you can get so frustrated with it that you just want to be able to take it all out.... You want to be able to talk to someone, but finding... You talk to your partner and you talk to your friends, but they don’t always understand what you’re saying.
The health professionals also recognized the potential benefits of peer-to-peer support for their patients, particularly the ways in which Internet-based provision extended the group sessions currently offered at the clinic.
HP1: We have group sessions...and they are teaching each other...from their experience.... And they’ll be able to do that on a regular basis, on a daily basis, rather than on a three-monthly basis, and they’ll all be there in the chat room, potentially, rather than just the people who turned up to the group clinic.
However, there were some minor concerns among health professionals that the peer-to-peer support could lead to the “propagation of myths” and to individuals passing on what had worked for them to others for whom it may be inappropriate. It was generally felt that monitoring the topics under discussion would be sufficient to counter these concerns. The issue of patients’ awareness and appreciation of the individual nature of diabetes is discussed below. A recent systematic review of the effects of online peer-to-peer interactions [21
] found no evidence to support concerns of causing harm, although it also failed to find robust evidence of any health benefit.
Awareness of the Personal Nature of Diabetes
As stated above, one of the concerns health professionals had about the peer-to-peer support was that patients using it may not realize that what had worked for one person may not work for others:
HP1: Patients frequently want to propagate what has been good for them, and it might not be good for everybody, if you know what I’m saying. They might have found some particular way of dealing with situations...but it doesn’t always apply to everybody.
However, it was clear from the focus groups with patients that they were very well aware of how diabetes affected them personally and that this may differ markedly between individuals. The knowledge and experience they had built up from managing their diabetes on a day-to-day basis were substantial, and they spoke at length about the need to evaluate suggestions posted on discussion boards in the light of their personal situation. The following is a typical example:
FGP8: Whatever I read on there [the discussion board] may be useful, but I know it’s not individually designed for me. So, overall it can be a useful guide when you start out, but you really do have to know your own system, don’t you.
This ability on the part of potential users to appraise the information posted on a discussion board and evaluate whether it is likely to be useful to them, together with existing research demonstrating that most information posted on boards of this kind is accurate (or very quickly corrected by other participants) [22
], indicates that the concerns voiced by health professionals are likely to be largely unfounded.
How an Internet-Based System Would Fit With the Current Provision of Care
The general consensus among the focus group participants and health professionals was that the proposed Internet-based system would fit well with existing clinic provision. The system would provide a useful means of communication and support between routine clinic appointments and would bring benefits in terms of increased standardization, more efficient means of communication, and extended scope of current group consultations through the use of Internet-based asynchronous discussion boards and real-time chat rooms. Some concerns were raised about a potential increase in the demand of health professionals’ time for dealing with messages received from patients, and this was identified as a potential factor that could hinder usage. However, the general consensus was that, in the local clinic at least, any additional time would be minimal and may well be offset through the time savings brought about by other benefits. This is one of the issues to be explored in the planned pilot study.
An Internet-Based System May Not Be Suitable for All
The vast majority of participants in the stakeholder consultation raised the point that an Internet-based system of the type proposed would not be suitable or appropriate for all people with diabetes. The main issue centered on the need for potential users to be comfortable with the required technology and to have a computer with Internet access. It was suggested that this may limit potential users to those who are younger and more familiar with technology, as supported by research by Giménez-Pérez et al [23
]. However, a recent study by McKay et al [6
] has shown that novice computer users will participate in an Internet-based system to assist their self-management. A further concern, raised particularly by a health professional, was that the system could be unsuitable for those with a poor understanding of their condition or for whom diabetes is only one of many health problems.