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Table 1 Data extraction form for reviewed papers

From: Assessing the implementability of telehealth interventions for self-management support: a realist review

Title and authors Sample, setting, and aims Key findings Effective Relationships Fit Visibility
1. Improving diabetes care for young people with type 1 diabetes through visual learning on mobile phones: mixed-methods study; Froisland DH, Arsand E, Skarderud F. Twelve participants (seven girls and five boys) aged 13 to 19 years; Norway; 1) To explore how applications for mobile phones can be used in follow-up of adolescents with type 1 diabetes, and (2) to use the findings to guide further development of the applications and as a basis for future studies Pictures and photos of food taken by and stored on mobile phones important in increasing understanding of link between food, insulin, and blood sugar. SMS access to healthcare professionals a safety net and allowed easy access Visualisation access software changes Yes Access: The healthcare professionals (HCP) through texts—positive instrument for bi-directional contact with healthcare providers ‘I liked the project and the follow-up. I could send an SMS whenever I wanted. I got an answer within half an hour. I especially liked the SMS—in the Netherlands, where I lived prior to this, I knew I could call, but I like the message system a lot better.’ Improves relationships as this offers more control over timing of access; close substitutes to face-to-face encounters not necessarily desirable; here, SMS is preferred to a telephone call; more control over managing relationships Mobile phone use nearly ubiquitous in adolescents, therefore, fits with daily life and skills in this generation Some problems with the software and need for improvement. Battery use problem ‘I didn’t like the diagram thing [in the Diamob apps]. It was a mess, and I didn’t like that it could not be tailored to each patient…And for instance I think it is stupid that it [the pictograms for activity] only marks sitting, lying, standing, and training, but maybe you don’t do the physical activity, and then, after an hour, it is time to go for a run.’ Visualisation: Pictures based diary of food better than SMS words and lots of information. Provided visual feedback of how what was eaten linked to insulin dose and blood sugar—led to improved understanding ‘It is just to browse back in the picture diary and look at how much [insulin] I actually needed to the food I had eaten, that is an advantage…’
2. Opportunities and challenges for smartphone applications in supporting health behaviour change: qualitative study; Dennison L, Morrison L, Conway G, Yardley L. Young adults: 19 students and staff at a university, focus groups; UK; a series of focus groups with healthy young adult smartphone users to explore: (1) their existing experiences of using health-related smartphone apps, and (2) their views about a range of different features, technologies, and capabilities that characterize currently available or future apps. We sought their views on features that might support them in making changes to behaviours relevant to health, factors that contribute to interest in apps, willingness to use the apps, and issues leading to disinclination to using the apps Apathy, concerns, and frustrations around health apps Checklist of valuable features Challenges for acceptable and effective behaviour change apps Yes Behaviour change, apps, and social networks Decisions and actions related to healthy lifestyle a private activity—socially undesirable ‘If this popped up, I think people would laugh at me’ Not to be used by linking to social network sites in a general way, ok if with specific group working to same goals. Credibility and accuracy Apps developed by experts preferable Smartphones as valuable information sources Already used regularly for health information. Used ‘on the go’ Scepticism over context sensing Technology to detect location, mood, social situation, and activity levels to offer advice—not wanted—too gimmicky and intrusive and inaccurate ‘If it gets it wrong, you would automatically get really irritated by it…I think the risk if getting it wrong would be really annoying and I’d probably delete the app Necessity of efficiency and convenience Need to be well integrated with how phones used naturally—not using up too much space or power ‘Its quite easy to lose interest really because it is quite an effort and nobody wants to spend all their life writing down what they want on their phone Disposability of apps Tracking progress and raising awareness ‘most people have their phones with them most of the time, so if you’re out and about and want to check how much you’re doing or what you’re burning when you’re walking, it’s a good idea’ Can use to set targets Records of tracked behaviour data could prompt healthier behaviour. But disappointing results could be negative ‘You’d probably be like, “oh well I might as well give up then, it’s too depressing’ Visibility not only about relations to others (anonymity, surveillance) but also relation to self (enhanced awareness and knowledge does not necessarily lead to better control of symptoms here). Useful prompts or harassment? ‘I would really like it, I think I need pushing into doing anything’ Nagging or harassing could lead to deleting app Motivation and Necessity of behaviour change Person needs to be already committed and signed up to it. Privacy and security concerns Worry about data getting into hands of third party. Some phone capabilities creepy and intrusive Keeping control over apps
3. Gender differences in diabetes self-management: a mixed-methods analysis of a mobile health intervention for inner-city Latino patients; Burner E, Menchine M, Taylor E, Arora S Eight people, 75% identified as Latino; USA; Focus groups to examine how texts impacted diabetes self-management Gender impacted the patients’ perceptions of the program, the challenges they faced and their individual management strategies. No Dietary self-efficacy differed by gender Men lacked knowledge and skills about diet. Women thought men needed more help from text-MED Women more reliant on info from social sources ‘Trusted friends and family. I have a really good friend; she is actually a nurse, so she’s the one that gives me a lot of advice. She has diabetes, too.’ Presence of peer support relevant, but might need to be tailored; different needs related to gender here, so presence of generic peer support might not be sufficient Health information sources differed by gender “I like to read; I don’t really talk to anyone about that.” Desired content of educational materials differed by gender ‘A topic, I can’t speak for ladies, but for males, um, health symptoms as far as performance.’  
4. Usability evaluation of an online, tailored self-management intervention for chronic obstructive pulmonary disease patients incorporating behaviour change techniques; Viola Voncken-Brewster, Albine Moser, Trudy van der Weijden, Zsolt Nagykaldi, Hein de Vries, Huibert Tange Eight COPD patients; Holland; Evaluate and improve usability of the eHealth intervention Need for improvements in layout, navigation, and mostly in content To some extent; suggestions for improvement   Content Length of program—too long Feedback not appropriate and needed to be tailored to severity of condition ‘If this is for people like me, there should be adjustments for functional limitations. Here they talk mainly about the possibilities, about people who are mobile etc., but the people who cannot get out of the house, for those adjustments should be made.’ Behaviour change module awkward for some ‘I find that hurtful… everybody has their own motives, you should not talk to people about that. I almost find that patronizing.’
5. Continuity, but at what cost? The impact of telemonitoring COPD on continuities of care: a qualitative study; Fairbrother Peter, Pinnock Hilary, Hanley Janet, McCloughan Lucy, Sheikh Aziz, Pagliari Claudia, McKinstry Brian Thirty-eight COPD; Scotland; qualitative study nested in RCT to explore views of patients and healthcare professionals on telemonitoring—focus on impact on continuity of care Relationship-based continuity of care important in delivery of telemonitoring services Operational challenges of ‘bolting on’ to existing usual care Yes Continuity identified as a challenge Reassurance, accessibility, and trust ‘Someone watching over them I think it's very good. It makes you feel like somebody’s looking after you. If anything goes wrong, you can get in touch with them any time you want … you’ve got the confidence that they're going to get something done. I can't fault them anyway.’ Frequency of contact and approachability of telemonitoring professional led to bonds of trust. Intermediary between patient and GP—bridged barriers ‘I’d say you get better [service] because if [telemonitoring professional’s first name] comes on the phone and she’ll say “I think you're needing to speak to the doctor”, she’s just giving me a warning that she’s going to get the doctor to phone me. And they’ll either say “Well, I think you’re needing to have some antibiotics” or “I think maybe we should pop over and just see you.”’ Practitioners felt they got to know patient better Technology not a substitute for trust based face-to-face contacts here but builds trust where there was no personal relationship before its introduction (the presumption that technology is a threat to existing relationships is not necessarily correct) Discontinuities Little information sharing in professional teams Issues of cost and continuity Problems when service centralised—leads to poor service ‘You’re on the phone [to NHS24] for about an hour. Really, it’s a joke … I mean at weekends usually if he’s taken ill he tried to hang off to the Monday.’ Records management and data interoperability Lack of interoperability between telemonitoring system and existing patient information. Increased volume of paperwork for telemonitored patients  
6. Exploring telemonitoring and self-management by patients with chronic obstructive pulmonary disease: a qualitative study embedded in a randomized controlled trial; Peter Fairbrother, Hilary Pinnock, Janet Hanley, Lucy McCloughan, Aziz Sheikh, Claudia Pagliari, Brian McKinstry Thirty-eight COPD; UK; to explore patient and professional views on self-management in the context of telemonitoring in chronic obstructive pulmonary disease Compliance medical model of self management paradoxically promotes dependence on professionals, patients considered that telemonitoring empowered self management by enhancing understanding of COPD Yes; But not as envisaged Telemonitoring data used to validate contact with healthcare professionals. Increased accessibility to validating knowledge overcame reticence to contacting professionals placing the patient in a more equal relationship to negotiate contact and access to resources (exactly the same as Rogers et al. 2011) Relationship between professional and patient remains one of compliance Easy use of O2 saturation measurements to inform decisions about capacity to undertake domestic activities such as household chores family excursion. Reinforced attempts to access services ‘. . .you still get the same attention [as “usual care”]. In fact, I’d say you get better because if [telemonitoring staff member] comes on the phone and she’ll say “I think you’re needing to speak to the doctor”, they’ll phone me right away—within 15 min of her phoning… And they’ll either say “well, I think you’re needing to have some antibiotics” or “I think maybe we should pop over and just see you and see what you’re like”.’ (Female, 69 years old) Many found it helpful to know their oxygen saturation and to learn their ‘normal’ range by identifying telemonitoring data trends over time. ‘I’m okay from 87% (oxygen saturation) upwards and I never get better than 92. Even when I’m very well, I never get better than 92. But I go out and about and I do what I need to do and I manage it by walking…’ A means of determining state of health that was empowering. ‘It gives me a lot more independence. I am not dependent on making the judgment myself. You’re using measurements which normally wouldn’t be available to me as a patient. . . that’s good.’ Validation of self medication decisions
7. Diabetes connected health: a pilot study of a patient- and provider-shared glucose monitoring web application; Alice J. Watson, Joseph C. Kvedar, Basmah Rahman, Alexandra C. Pelletier, Gregory Salber and Richard W. Grant USA; Real-time sharing of blood glucose results with providers could improve communication and lead to more timely medication titration. New technology platforms are available to support the delivery of innovative models of care delivery Patients satisfied and its acceptable Yes; Primarily in terms of acceptability The DCH application facilitated greater communication between patient and provider. ‘The system helped facilitate communication. It can help get rid of appointments to the doctor, and medication adjustments can be more immediate.’ ‘Program was good for providing feedback to provider.’ ‘My provider discussed the journal page during my visit ‘Found it kind of helpful and fun to track what I was eating and how that affected my readings … in particular when I was supposed to have a medication change’ The use of the product increased patients’ general awareness of their blood sugar and its changes. ‘The ability to notice trends on the days of the week and times of the month.’ ‘Graphs are a quick way of seeing how [blood sugar] fluctuates.’ ‘I found it much easier to keep track of both my numbers and what I ate. For me it was a great diary.’ Patients are motivated to improve self-management because they know their provider is watching. ‘Sometimes I forget to take my blood glucose, but if I knew that someone was looking at them, then I will be more compliant.’ ‘If I knew that someone was looking at this information on the other end at BMG, I would definitely continue to use it.’ ‘Just physician acknowledgement is very useful’
8. Patients’ experiences of self-monitoring blood pressure and self-titration of medication; Miren I Jones, Sheila M Greenfield, Emma P Bray, Sabrina Baral-Grant, FD Richard Hobbs, Roger Holder, Paul Little, Jonathan Mant, Satnam K Virdee, Bryan Williams and Richard J McManus Twenty-three patients and 6 family members; UK; to explore patients’ views of self-monitoring blood pressure and self-titration of antihypertensive medication Patients were confident about self-monitoring Yes Additional support needed for some patients. Although patients received training on making medication changes without seeing a GP, several chose to reconsult before implementing such changes. This was usually because they lacked confidence or because of problems with their medication-change forms. Family members of patients who needed assistance with the trial were more cautious about implementing changes, and relatives of patients 25 and 30 accompanied the patient to visit the GP before making changes during the introduction but were confident to continue alone if had input at this early stage additional support or tailoring for some groups of patients needed; generic input by network members might be insufficient Blood pressure monitoring Patients felt that home blood pressure readings were more ‘natural’ than surgery readings, as they were more relaxed at home and the readings were taken more carefully and under controlled conditions Not about fit with existing practice, but perceived improvement; adding/enhancing what is perceived as ‘best conditions’? Many were surprised at how much their readings varied, and some suggested that changing their medication based on fewer readings was not appropriate, due to this variability. This led them to question whether a GP should adjust a patient’s medication after taking a single reading: ‘I was amazed how much they varied. That was very educational. I mean okay if there’s a crisis or something, you expect your blood pressure to go up, but I could take them just sitting there and it was just amazing the difference in them.’ (P29, F, 78, made medication change 1, medication change 2 postponed)
9. Innovation and evaluation: taming and unleashing telecare technology; Jeannette Pols and Dick Willems Nine COPD patients; Holland; Telecare is advocated in most European countries with great, if not grandiose, promises: improving healthcare, lowering costs, solving workforce shortage. This paper does not so much question these specific promises but rather the ‘register of promising’ as such by comparing the promises with actual processes of incorporating technologies in healthcare practices In order to function, at all, technology has to be tamed, it has to be tinkered with to fit the practices of the users. The technology, however, is not meekly put to use (tamed), but is unleashed as well, affecting care practices in unforeseen ways. The untenability of pre-given promises and the fluidity of locally evolving goals has important implications for the way in which innovations are promoted, as well as for the way innovative technologies may be evaluated. Yes Rather than policy notions of ‘dealing with ageing population’ and ‘reducing caregiver-patient visits’ the clinicians concerned formulated goals that were relevant for their own practices: to deliver good care and improve care if possible. Support and company from other participants ‘Oh yes, seeing each other [over the webcam] is different from talking on the telephone… It is much more personal. And much cosier! For instance with Peter’s wife, when I talk to Peter she comes along to chat for a bit. And she was there [at the clinic] a lot too, same as my husband. And he chats along too. Or the guys chat together: “Gosh, how are you”, or; “We are in town this Saturday, will you be home?”’ The video conversation was experienced as much more personal and intense than telephone conversation rather than resembling the ‘real encounter’. Telecare was made interesting to the users as a necessary step for users to put in effort and make it work. Attempts to extend the use of the telekit to a wide range of users did not work and there was a high level of dropout. This was because: there was not enough space in the house, not wanting to have an extra computer, plans for moving house, not wanting to make the disease too central to their lives. Also for people who were in better health and went back to work telephone calls were disruptive and using the telekit was not practical. The telekit was based on Apple application and this created problems of usability as most people were familiar and/or had access to windows and thus had to later adapt their knowledge; the volunteers providing the training also did this on windows. The telekit obtained two different identities that were in conflict: guaranteeing the effect of the treatment and providing a window to the world. These required different ways of ‘taming’ the technology. The hardware was available for 3 months only and after that only training was given, but it was not seen as the responsibility of the clinic to provide computers access beyond this point. The use of the internet and e-mail had the potential of becoming structural activities, as ways of seeking entertainment and keeping contacts. Using the internet could support services such as having the shopping brought to one’s home, becoming a member of online entertainment sites, for example, to play bridge, or joining social websites. The telekit would thus become more structurally part of the social, practical and emotional life of the patients, allowing for many different contacts, after the carer from the clinic had stopped seeing them. It would be a device to help patients build up their new world. Brings structure to a disrupted everyday life The participation in The day’s start may in this sense be an aid to structure the day, by getting up in the morning in time to attend. This is what one of the patients mentioned. After his discharge from the clinic, back at home he felt he dropped into a black hole. The telekit helped him to structure his days Opening new possibilities unused before ‘We teach them to write e-mails. And there was one man, he had a son who lives in Japan. And in the meantime he has become a grandparent, but he had never heard of the internet. So he got this internet connection at home, and his son sent him his email address. And I helped him typing the e-mail address, and when he got an answer he got pictures and saw his grandchild for the first time. Really, if you see this older man looking at a picture with tears in his eyes’ Continuity of care and the telekit as an ‘umbilical cord’ ‘Ah, over the webcam you can see the smoking cigarettes in the background. When someone says: I am doing fine! You can see from the way somebody keeps his or her body that they are not fine at all. When you can see that, you can say: your shoulders are too high, are you ok?’ Contacts with fellow patients would serve the same purpose of bridging the gap between the clinic and the home
10. Dismantling sociocultural barriers to eye care with tele-ophthalmology: lessons from an Alberta Cree community Sourabh Arora; Ayaz K Kurji; Matthew TS Tennant Aboriginal patients, cultural liaison, nurses and program administrators; Canada; to determine whether tele-ophthalmology services, provided to Aboriginal Canadians in a culturally sensitive community-based clinic, could overcome social and cultural barriers in ways that would be difficult in the traditional hospital-based setting The introduction of culturally sensitive programs led to increased appointment attendance; from 25% to 85%. Involvement of Aboriginal nurses, inclusion of culturally sensitive activities and participation in spiritual ceremonies led to qualitative accounts of increased patient satisfaction, trust towards the healthcare team and communication amongst participants Yes When the nurse would speak to patient she would ask ‘how do you feel emotionally?’ and ‘how do you feel spiritually?’ patients felt that when vision is lost, it was also spiritual loss and aborigional nurses could understand this better The delivery of the programme was made to resemble practices familiar from encounters with traditional healers. This included provided snacks as traditional healers would do, ‘smudge’ ceremony, sitting in a circle and discussing health together with spiritual and emotional health as aspects of adopting healthy living, setting a tepee outside the centre where the programme was delivered. This was supported by an aboriginal nurse and/or a liaison assistant. There were financial, transport and distance barriers to attending  
11. Attitudes to COPD patients towards tele-rehabilitation: a cross-sector case study; Birthe Dinesen, Lotte Huniche, Egon Toft Twenty-two COPD patients; Denmark; to describe patients’ attitudes towards tele-rehabilitation in the Danish TELEKAT to better understand patients’ behaviour when performing tele-rehabilitation activities in home surroundings COPD patients exhibit four types of attitudes about their tele-rehabilitation: indifference, learning as part of situations in everyday life, feeling of security and motivation for performing physical training. The patients express the view that they circulate between these attitudes depending on their physical and emotional state as they perform their training. The COPD patients and healthcare professionals have created a community of tele-rehabilitation across sectors, exchanging experiences, stories and strategies for how to manage rehabilitation in home surroundings Yes Sense of common interest and purpose The healthcare professionals experienced the patients as having a common interest in tele-rehabilitation and in participating directly in their rehabilitation. Active involvement by healthcare professionals The healthcare professionals reported that they gave some of the patients more responsibility for managing their own disease, and the patients received a treatment plan consisting of prescriptions for penicillin and hormones and guidelines for what to do in case symptoms appeared. In this way, the patients became more active, changing their mind-set, and were able to perform self-management of their COPD. Need for tailoring of level of professional and network involvement Family involvement and support The patients reported that family and network became more engaged in the tele-rehabilitation program of helping the patient to integrate the activities into their everyday routine and maintain the focus on exercise as a normal part of their everyday lives. Felt supported and expected further monitoring Those patients who were using oxygen in their homes felt that the 16-week tele-rehabilitation period was too short. They preferred the possibility of being monitored permanently. encouraged by having access to remotely supervised feedback from healthcare professionals; interaction with healthcare professionals and other patients encouraged them to carry out their physical training at home and to push themselves. The intervention as a process of changing relationships within wider network The interaction between the COPD patients and healthcare professionals in the tele-rehabilitation programme can be characterized in terms of Wenger’s approach as a ‘community of tele-rehabilitation’. This community links COPD patients, their family members and healthcare professionals across sectors. The COPD patients have expressed the view that their relationships with the healthcare professionals had developed from that of being subordinated to professional authority to a relationship of dialogue, where the focus was on mutual learning NOTE: the web platform also enabled discussions with other users, but this is not discussed in the paper; not clear how much this was used; relationships change discussed primarily in relation to professionals and existing network members Good fit with time and space These 17 patients expressed the view that the technological platform in the TELEKAT project opened the possibility for them to obtain data, share data and communicate with healthcare professionals and other patients independently of time and space. Fit with daily life These 12 patients found that the tele-rehabilitation programme gave them time to try new exercises, to become more involved, and to adjust their training program to their home environment and situations in everyday life. They found it convenient that they could do their exercises at home, at any time. Access Easy access to healthcare professionals Changing needs and attitudes to tele-rehabilitation; flexibility and telehealth as a process COPD patients exhibit four attitudes about their tele-rehabilitation: indifference, learning as part of situations in everyday life, feeling of security and motivation to perform physical training. The patients express the view that they alternate between these attitudes, depending on their physical and emotional state as they perform their rehabilitation exercises Gained new knowledge Twelve patients reported that they gained new knowledge by communicating and interacting about the measured values, symptoms, medication and exercises, as well as in the social and cultural process of exchanging experiences, stories from everyday life and how to address rehabilitation-related issues in their home surroundings. Visibility of measurements and awareness of symptoms The patients stated that they became more aware and reflected upon the measured values and symptoms in their COPD. Via their interaction with the healthcare professionals and other patients in the programme, they learned to become more aware of their own symptoms and to know when it was necessary to contact a doctor at an early stage in order to seek treatment. As one patient said: ‘Seeing my data on the web portal gives me a better understanding of how to exercise and interpret the development of my symptoms when I experience the onset of an exacerbation.’ Being able to actually see the graphically presented data (blood pressure, pulse, weight, spiometry, and saturation) on the web portal or tele-health monitor motivated the patients to continue training and to compete with themselves, especially when the measured values showed improvement over time. Observed no effect of intervention A small number of patients (5/22) experienced indifference towards the tele-rehabilitation measures. The patients argued that it was because the measured values (blood pressure, pulse, weight, spirometry, and saturation) were stable. These patients reported that they were unable to observe any connection between measured values and physical training over time when they followed their data on the TELEKAT web portal or on their tele-health monitor. Demanded further monitoring Those patients who were using oxygen in their homes felt that the 16-week tele-rehabilitation period was too short. They preferred the possibility of being monitored permanently
12. Telemonitoring for chronic heart failure: the views of patients and healthcare professionals—a qualitative study; Peter Fairbrother, Jenny Ure, Janet Hanley, Lucy McCloughan, Martin Denvir, Aziz Sheikh and Brian McKinstry on behalf of the Telescot programme team Eighteen patients, 5 professionals; Scotland; to understand the views of patients and professionals on the acceptability and perceived usefulness of telemonitoring in the management of chronic heart failure in the context of day-to-day care provision Telemonitoring was popular with patients because they felt reassurance arising from what was perceived as continuous practitioner surveillance. Professionals expressed concern regarding perceived patient dependence on practitioner support. Increased workload was also a concern Yes Support and reassurance Many stated that they liked being telemonitored because they felt reassurance arising from what was perceived as the provision of continuous practitioner surveillance and support Depth and frequency of communication and growing dependence Many professionals considered that patients’ access to telemonitoring data combined with increased accessibility of healthcare professionals operating telemonitoring services increased both the depth and frequency of communication between patients and professionals. While this was often considered a good thing in terms of supporting early intervention and preventing deterioration in health, professionals also expressed concern regarding perceived greater patient dependence on practitioner support. Tensions between patient and practitioner interpretations Many thought the service was designed to increase practitioner support rather than to foster greater personal responsibility: ‘I know if there is something wrong, they are going to pick it up right away… if something goes wrong, they’ll phone me. [It’s a] safety net.’ (patient #29: male, 79 years old) Practitioner attempts to encourage involvement in self-management (for example, in attempts to encourage patient participation in self-directed medication) received a mixed response, with some expressing anxiety and trepidation at the prospect of being required to exercise greater personal responsibility Tension between objectives: monitoring and SMS Professionals queried the utility of the telemonitoring technology in supporting patient self-management. One respondent remarked that the IHG questionnaire was devoid of questions or prompts to encourage and support self-management attitudes or behaviours. Relationships based on continuity of care Many patients expressed a preference for being telemonitored by professionals with whom they had an existing association. Professionals discussed proposed models of future telemetric provision, including the proposition of a centralised regional service, operated by nonclinical professionals, which had been mooted by healthcare managers. They considered integration of telemetric provision with local practitioner services preferable to centralised ‘call centre’-type provision, emphasising the value of relationship-based continuity of care over cost benefits associated with centralisation Usability Telemonitoring was extremely popular with patients. All of the respondents found the technology easy to use. Both groups described numerous technical difficulties with the technology, teething difficulties, concerns and design issues. Patients and professionals reported experiencing technical problems with the equipment, notably recurrent malfunctions with the peripheral devices. Some commented on the intrusiveness of the equipment, remarking on the noise and luminosity of the IHG and its size or bulkiness in the home. Cost of equipment and maintenance Both groups raised concern regarding the expensiveness of the equipment, the cost consequences of installation (which required the fitting of broadband cabling in patients’ homes) and the ongoing costs of support and maintenance Integration with existing systems Professionals described problems arising from the perceived lack of interoperability between the (stand-alone) telemonitoring patient information system and existing patient information systems used in both primary and secondary care. They indicated frustration with the limited functionality of the telemonitoring system, and the compartmentalisation of data between telemetric and usual care information systems. Disruption of established medication regime Changes in medication were not always received with enthusiasm by patients. Some felt that alterations to their medication did not result in an improvement in their condition. Such changes led some to query prescribing practice under usual care: ‘As a result of [telemonitoring], they increased the quantity of one of the drugs I’m taking… which hasn’t made the slightest difference.’ (patient #22: male, 76 years old) Workload and practice The impact of telemonitoring on home visits and existing practice was of particular concern to professionals. The telemonitoring responsibilities undertaken by professionals were additional to existing professional responsibilities. Consequently, professionals expressed the view that telemonitoring added to workload. They considered it time and resource intensive, describing the work involved in checking online data, in dealing with additional administration, and in increased communication and interaction with patients Feedback and new knowledge Patients also expressed the view that they felt better informed and more knowledgeable about their condition as a result of involvement in the telemonitoring. Many found it helpful to know their weight, blood pressure, and oxygen saturation score and to have the facility to monitor data trends over time. This was considered beneficial in determining state of health: ‘It keeps you in the picture… And you know exactly what’s going on from day to day… And it also lets [the telemonitoring nurse] know exactly what’s going on’ (patient #2: male, 75 years old) ‘I felt quite happy to be involved… instead of just being a vegetable that sat back and swallowed things.’ (patient #24: female, 79 years old) For professionals: facilitated closer monitoring Professionals perceived that telemonitoring facilitated ‘closer monitoring’ of patients. Telemonitoring data were attributed as providing a more detailed picture of patient health than usual care, enabling the professional to take pro-active approaches to clinical management Improved prescribing For some professionals, telemonitoring supported the development of prescribing practice, providing an evidence base for the trialling of medications on selected patients.
13. Spanning boundaries into remote communities: an exploration of experiences with telehealth chronic disease self-management programs in rural Northern Ontario, Canada; Sara J.T. Guilcher, Tarik Bereket, Jennifer Voth, Vinita A. Haroun, Susan B. Jaglal, Forty-four participated in focus groups; Canada;to explore the experiences of participants in a chronic disease self-management program via telehealth (tele-CDSMP) and to identify facilitators and barriers to inform future tele-CDSMP delivery models in rural and remote settings Four main themes were identified by tele-CDSMP participants related to the overall experience of the program: (1) bridging the access gap, (2) importance of group dynamics, (3) importance of strong leaders, and (4) preference for extended session time. Key barriers were related to transportation, lack of session time, and access to Internet-based resources. The main facilitators were having strong program leaders, encouraging the development of group identity, and providing enough time to be comfortable with technology Yes There could be stigmatization about CI in their everyday life and the group provide a safe and supportive environment. The program encouraged building new connections and avoiding isolation. Some of the people remained in contact after the end of the programme. Developing accountability and motivation via peer coaching. Support by peers extended beyond the meeting site and continued outside of the studio. Success of group depended on having supportive and knowledgeable group leaders, who created good group dynamic. Insufficient time to discuss action plans and concerns one to one with the facilitator, which was available in face to face sessions but not in the telehealth intervention Participants were hesitant at times to speak into the microphone and participate, and effective facilitation was important in overcoming that. While the group dynamic worked it took a couple of sessions before the participants felt comfortable with the technology. Access to Internet-based resources was mentioned as one of the barriers for participation. Transport to site of teleconferencing a barrier The group provided a mechanism for sharing experiences and feelings about CI. The group environment encouraged information sharing about community resources and individual strategies to encourage day-to-day healthy eating, nutrition, and exercises
14. Piloting tele-monitoring in COPD: a mixed methods exploration of issues in design and implementation; Jenny Ure, Hilary Pinnock, Janet Hanley, Gillian Kidd, Emily McCall Smith, Alex Tarling, Claudia Pagliari, Aziz Sheikh, William MacNee, Brian McKinstry Twenty of the 27 patients in the pilot and 25 professionals participated. (n = 55 interviews and one focus group); Scotland; to explore the perceptions of patients and professionals about the pilot implementation of the COPD tele-monitoring service Tele-monitoring was perceived by patients as improving access to professional care, but raised concerns for clinicians about possible over-treatment and how best to organise services to support the technology Yes Some patients appreciated the possibility of a remote consultation informed by the tele-monitoring data, thus avoiding the need to travel to the surgery. ‘You know if something was wrong I’d get a phone call from the surgery… they’d write a prescription and I’d get it sent to the chemist and then I’d get it delivered direct. Because if I’m unwell that’s one thing I have to face is that long walk to [the surgery], because there’s no bus direct from here and, you know, when I’m unwell’ (Female patient, 66 years old, post-installation) Empowering self-care or increasing dependence? There was an over-riding sense from patients and carers that the tele-monitoring system ‘watched over’ and ‘looked after’ them. Although some patients seemed to be describing an abrogation of personal responsibility as the technology could take over the decision about whether action was needed, most perceived that having access to readings and emergency supplies of antibiotics at home gave them confidence to respond to deteriorating symptoms themselves. ‘In a way it was a relief thinking that I should ignore my own thoughts on getting a doctor or something like that. This organisation was going to get hold of a doctor if their readings showed I needed a doctor.’ (Female patient, 47 years old, post-installation) Usability Despite some irritations with the technology, patients were generally very positive about the tele-monitoring service. Completing the symptom scores was not always intuitive for patients who were constantly symptomatic. The questions asked if breathlessness or cough had increased, but some patients found it difficult to set a standard against which to benchmark their symptoms. ‘It asks “Is it higher than normal?” I don’t know what the normal’s supposed to be. So I don’t know what… Sometimes it’s not all black and white.’ (Male patient, 69 years old, post-installation). In general, the professionals’ perception of benefits outweighed the initial rearrangement of work practices to accommodate the monitoring. Increased workload Workload had increased as telephone calls or, occasionally, visits were made to clarify the reality of the individual clinical situation when the score breached the threshold. At the observation visits it was noted that the equipment generally integrated well into the home environment, although the size and background noise of the computer fan caused some problems in smaller more crowded living conditions. Most users quickly became familiar with the technology and found it easy to use. One particular worry was that the system failed to confirm that data had been transmitted, leaving patients uncertain whether the monitoring had been successful. None of the patients were concerned about confidentiality - if anything, they were worried that their data may not be shared widely enough Patients consistently expressed anxieties about managing exacerbations, describing the difficulty of recognising the onset of an exacerbation, delays as they considered whether to seek professional advice, and the practical barriers to accessing professional care. Tele-monitoring was almost universally considered by both patients and their carers as helping to address these problems ‘You’d think you would find it easy to tell when you’re ill but it’s only afterwards that you know you are not well. But this technology is really brilliant.’ (Female patient, 66 years old, post-installation) Recognising exacerbations or over-treatment? In keeping with the patients’ assessment that the telemonitoring was sensitive to changes in their condition, clinicians initially assumed that the marked increase in prescriptions for antibiotics and steroids reflected improved recognition of exacerbations, although the possibility that the threshold for triggering an alert may have been set too low was raised. Later, the risks and benefits of what was perceived as a substantial increase in prescribing became a concern.
15. Perceptions of successful cues to action and opportunities to augment behaviour triggers in diabetes self-management: qualitative analysis of mobile intervention for low income Latinos with diabetes; Burner ER, Menchine MD, Kubicek K, Robles M, Arora S Five focus groups with 24 people; USA; we examined nuances of motivation, intention, and triggers to action effected by TExT-MED (trial to examine text messaging for emergency department patient with diabetes), an mHealth intervention tailored to low-income, urban Latinos with diabetes Low-income Latino patients will accept text messages as a behavioural intervention. This mHealth intervention acts as a behavioural trigger rather than an education platform. Personalization is an opportunity to enhance these cues to action Yes Recommended programme to family and friends The appearance of support, although aware this is an automated service Participants said they would feel more cared for if the messages were personalised, including the name and the specific time for taking medication (programme used the same messages across participants to increase scalability). Participants wanted personalisation in terms of negative consequences of the disease specific to the stage at which each one of them was Found behaviour cues and medication reminders easy to follow Sense/perception that the programme has worked for them to take control over diabetes and make the behaviour changes they believed to be of benefit for them ‘better controlling our life, our way of living’. Medication reminders were the most salient and prominent benefits mentioned. This included specific prompts. Healthy living challenge messages about specific behaviours had an impact; ‘the challenges you send us. One imagines that when I see the message, and when I read the challenge, those are my challenge for the day…I read them and say, “I have to do this”. I motivate myself, like if I am going to go for a walk.’