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ABSTRACT: We explore peer-to-peer discussions which took place in a UK-based diabetes 'Virtual Clinic' online community. In particular, we seek to understand the rhetorical nature and content of exchanges over a period of six months from the community's inception. Data were captured weekly and analysis based on thematic discourse analysis. Two key issues emerged regarding how the community shaped the nature of the discussion forum. First, the identity of the forum was established, and boundaries drawn about what was, and was not, acceptable. Second, participants sought to present themselves as reliable and authoritative sources of information. Internet discussion communities are shaped in important ways early on by the community of users, including how the character and focus of discussion is formed, and how both information and users can be constructed as authoritative and reliable.
Health 11/2011; 16(4):347-65. · 2.10 Impact Factor
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ABSTRACT: Examine the effectiveness and impacts of the networked communication technologies used by health care professionals for the treatment of adolescents/young adults with mental health disorders.
Nine electronic databases were searched. Quantitative and qualitative study designs were included, technologies were described and a narrative synthesis of all included studies was undertaken.
20,925 papers were identified from which 12 interventions met the inclusion criteria. Three categories of networked communication were identified: email and/or web-based electronic diary (n=6); videoconference (n=5); and virtual reality (n=1). Three studies reported statistically significant improvements in symptoms post intervention; all involved email communication. Patients were willing to use networked communication in routine care in nine studies.
Networked communication technologies can increase the opportunity for communication between patient and health care professionals. Limited improvements in quality of life and continuity of care for patients were reported. Patients and health care professionals expressed some satisfaction with technologies. Further research exploring concerns over privacy and security is needed.
Networked communication technologies have the potential to be a useful addition to mental health services delivery, however the impact and effectiveness of these technologies is inconclusive.
Patient Education and Counseling 01/2011; 85(2):e108-19. · 2.31 Impact Factor
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ABSTRACT: Most households in the United Kingdom have Internet access, and health-related Internet use is increasing. The National Health Service (NHS) Direct website is the major UK provider of online health information.
Our objective was to identify the characteristics and motivations of online health information seekers accessing the NHS Direct website, and to examine the benefits and challenges of the health Internet.
We undertook an online questionnaire survey, offered to users of the NHS Direct website. A subsample of survey respondents participated in in-depth, semistructured, qualitative interviews by telephone or instant messaging/email. Questionnaire results were analyzed using chi-square statistics. Thematic coding with constant comparison was used for interview transcript analysis.
In total 792 respondents completed some or all of the survey: 71.2% (534/750 with data available) were aged under 45 years, 67.4% (511/758) were female, and 37.7% (286/759) had university-level qualifications. They sought information for themselves (545/781, 69.8%), someone else (172/781, 22.0%), or both (64/781, 8.2%). Women were more likely than men to seek help for someone else or both themselves and someone else (168/509 vs 61/242, χ(2) (2) = 6.35, P = .04). Prior consultation with a health professional was reported by 44.9% (346/770), although this was less common in younger age groups (<36 years) (χ(2) (1) = 24.22, P < .001). Participants aged 16 to 75 years (n = 26, 20 female, 6 male) were recruited for interview by telephone (n = 23) and instant messaging/email (n = 3). Four major interview themes were identified: motivations for seeking help online; benefits of seeking help in this way and some of the challenges faced; strategies employed in navigating online health information provision and determining what information to use and to trust; and specific comments regarding the NHS Direct website service. Within the motivation category, four concepts emerged: the desire for reassurance; the desire for a second opinion to challenge other information; the desire for greater understanding to supplement other information; and perceived external barriers to accessing information through traditional sources. The benefits clustered around three theme areas: convenience, coverage, and anonymity. Various challenges were discussed but no prominent theme emerged. Navigating online health information and determining what to trust was regarded as a "common sense" activity, and brand recognition was important. Specific comments about NHS Direct included the perception that the online service was integrated with traditional service provision.
This study supports a model of evolutionary rather than revolutionary change in online health information use. Given increasing resource constraints, the health care community needs to seek ways of promoting efficient and appropriate health service use, and should aim to harness the potential benefits of the Internet, informed by an understanding of how and why people go online for health.
Journal of Medical Internet Research 01/2011; 13(1):e20. · 4.41 Impact Factor
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ABSTRACT: Research has investigated whether communication technologies (e.g. mobile telephony, forums, email) can be used to transfer digital information between healthcare professionals and young people who live with diabetes. The systematic review evaluates the effectiveness and impact of these technologies on communication.
Nine electronic databases were searched. Technologies were described and a narrative synthesis of all studies was undertaken.
Of 20,925 publications identified, 19 met the inclusion criteria, with 18 technologies assessed. Five categories of communication technologies were identified: video-and tele-conferencing (n = 2); mobile telephony (n = 3); telephone support (n = 3); novel electronic communication devices for transferring clinical information (n = 10); and web-based discussion boards (n = 1). Ten studies showed a positive improvement in HbA1c following the intervention with four studies reporting detrimental increases in HbA1c levels. In fifteen studies communication technologies increased the frequency of contact between patient and healthcare professional. Findings were inconsistent of an association between improvements in HbA1c and increased contact. Limited evidence was available concerning behavioural and care coordination outcomes, although improvement in quality of life, patient-caregiver interaction, self-care and metabolic transmission were reported for some communication technologies.
The breadth of study design and types of technologies reported make the magnitude of benefit and their effects on health difficult to determine. While communication technologies may increase the frequency of contact between patient and health care professional, it remains unclear whether this results in improved outcomes and is often the basis of the intervention itself. Further research is needed to explore the effectiveness and cost effectiveness of increasing the use of communication technologies between young people and healthcare professionals.
BMC Endocrine Disorders 01/2011; 11:1. · 2.16 Impact Factor
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ABSTRACT: Dementia is one of the greatest contemporary health and social care challenges, and novel approaches to the care of its sufferers are needed. New information and communication technologies (ICT) have the potential to assist those caring for people with dementia, through access to networked information and support, tracking and surveillance. This article reports the views about such new technologies of 34 carers of people with dementia. We also held a group discussion with nine carers for respondent validation. The carers' actual use of new ICT was limited, although they thought a gradual increase in the use of networked technology in dementia care was inevitable but would bypass some carers who saw themselves as too old. Carers expressed a general enthusiasm for the benefits of ICT, but usually not for themselves, and they identified several key challenges including: establishing an appropriate balance between, on the one hand, privacy and autonomy and, on the other: maximising safety; establishing responsibility for and ownership of the equipment and who bears the costs; the possibility that technological help would mean a loss of valued personal contact; and the possibility that technology would substitute for existing services rather than be complementary. For carers and dementia sufferers to be supported, the expanding use of these technologies should be accompanied by intensive debate of the associated issues.
Ageing and Society 07/2010; 30(06):1073 - 1088. · 1.16 Impact Factor
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John Powell
BMJ (Clinical research ed.). 01/2010; 341:c5168.
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ABSTRACT: Women are actively encouraged to educate themselves about pregnancy from formal sources (e.g., information leaflets, antenatal classes, books). In addition, informal stories of pregnancy and birth are routinely told between women. However, increased prenatal testing means that more fetuses are diagnosed with abnormalities, shifting the information requirements during pregnancy. Traditional sources of information cannot cover all possible outcomes, and the Internet is beginning to fill this gap. In this article, we draw from interviews about experiences of antenatal screening and pregnancy to explore how the Internet provides a unique resource for problematic pregnancies. It allows access to information about rarer conditions beyond standard pregnancy texts, as well as personal narratives about conditions. Learning how others have coped or are coping in similar situations can help alleviate feelings of isolation, and also places women back in a familiar territory of shared pregnancy narratives.
Qualitative Health Research 10/2009; 19(10):1476-84. · 2.19 Impact Factor
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ABSTRACT: Background Use of the Internet for health information by patients is growing, and there have been diverse responses to this both within the research community and the medical and health-related professions. The use of Internet discussion boards are one way that people living with long-term conditions can interact with their peers and offer and seek advice, support and information. We report patient perspectives on using a discussion board within a wider pilot study of an Internet-based self-management system for diabetes.Design Qualitative data was gathered during three stages of developing and piloting the wider self-management system. These are: (1) patient focus groups as part of a stakeholder consultation; (2) a pre-test session and focus group; and 3. a 6-month pilot study including follow-up individual interviews.Results Three main themes were identified within participants’ perspectives on Internet discussion boards. First, a focus on the importance and value of peer support to these patients. Secondly, participants’ awareness of the need to evaluate the information posted by others in light of their own circumstances. Thirdly, the value placed upon the experiential knowledge of others living with the same condition.Conclusions Many people living with long-term conditions would like to be in contact with their peers, and Internet discussion boards represent a cost-effective and interactive way of achieving this. Within the context of diabetes, the knowledge and expertise accumulated over many years of self-management is central to participants’ self-reported ability to evaluate information posted and make decisions on its possible use.
Health expectations: an international journal of public participation in health care and health policy 08/2009; 12(3):313 - 320. · 1.80 Impact Factor
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ABSTRACT: Use of the Internet for health information by patients is growing, and there have been diverse responses to this both within the research community and the medical and health-related professions. The use of Internet discussion boards are one way that people living with long-term conditions can interact with their peers and offer and seek advice, support and information. We report patient perspectives on using a discussion board within a wider pilot study of an Internet-based self-management system for diabetes.
Qualitative data was gathered during three stages of developing and piloting the wider self-management system. These are: (1) patient focus groups as part of a stakeholder consultation; (2) a pre-test session and focus group; and 3. a 6-month pilot study including follow-up individual interviews.
Three main themes were identified within participants' perspectives on Internet discussion boards. First, a focus on the importance and value of peer support to these patients. Secondly, participants' awareness of the need to evaluate the information posted by others in light of their own circumstances. Thirdly, the value placed upon the experiential knowledge of others living with the same condition.
Many people living with long-term conditions would like to be in contact with their peers, and Internet discussion boards represent a cost-effective and interactive way of achieving this. Within the context of diabetes, the knowledge and expertise accumulated over many years of self-management is central to participants' self-reported ability to evaluate information posted and make decisions on its possible use.
Health expectations: an international journal of public participation in health care and health policy 07/2009; 12(3):313-20. · 1.80 Impact Factor
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ABSTRACT: We developed a virtual clinic to assist patients who use insulin pumps in the management of their diabetes. The virtual clinic offered access to information, communication with health professionals and interaction with peers. Seventeen patients were recruited from three hospital clinics. Participants completed questionnaires before and after using the clinic for a six-month period. Usage was initially high but then declined. In the first two months 1691 page-views were recorded, but in the final two months only 355 page-views were registered. Users found participation reassuring. They rated peer interaction as the most desirable and the most useful of the features available. Using an Internet-based clinic to support the self-management of diabetes is feasible and acceptable to patients.
Journal of telemedicine and telecare 02/2009; 15(3):150-2. · 0.92 Impact Factor
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ABSTRACT: Internet-based interventions to assist in diabetes management have the potential to provide patients with the information and support they need to become effective self-managers.
To assess the feasibility, acceptability, and effectiveness of an Internet-based virtual clinic designed to facilitate self-management in patients who used insulin pumps to manage their diabetes.
For a period of 6 months, 17 patients joined the virtual clinic. The system allowed patients to communicate with health professionals, interact with peers and access information. HbA1c, quality of life, and self-efficacy were monitored at baseline and after 6 months. Questionnaires and qualitative interviews examined patient experiences.
Participants found the virtual clinic easy to use and positively rated its design. Peer support was the most valued aspect and the discussion boards the most used component. All participants highly rated the virtual clinic in terms of improving communication with peers, but few agreed it had improved communication with health care professionals. No significant improvements in physiological and psychological measurements were found. Regarding HbA1c measurements, there was no significant difference found between the pre- and post-test results (P = .53). Mean ADDQoL scores at baseline were -2.1 (SD 1.1, range -3.4 to -0.5) compared to -2.0 (SD 1.2, range, -4.6 to -0.4) post-test (n = 12), (P = .62). Surprisingly, patients' confidence in their ability to perform self-care tasks was found to be significantly reduced from baseline to follow up (P = .045).
An Internet-based system to aid the management of diabetes appears feasible and well accepted by patients. The pilot study did not identify evidence of an impact on improving quality of life or self-efficacy in patients who used insulin pump therapy.
Journal of Medical Internet Research 01/2009; 11(1):e10. · 4.41 Impact Factor
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ABSTRACT: Self-care is a way of helping the health service to manage the growth in long-term chronic conditions. We developed an Internet-based self-management tool for diabetes following detailed consultations with patients. The Virtual Clinic allows a patient to communicate with their health professionals, find information about their condition and share support and advice with others through peer-to-peer discussions. We conducted a test of the Virtual Clinic with five patients prior to the start of a six-month pilot study to evaluate its feasibility, acceptability and effectiveness. The test session involved an interactive computer-based element followed by a focus group to gather feedback. All five patients were positive about the Virtual Clinic. A user-centred approach to developing an Internet intervention is important to ensure that it will meet patients' needs and that they will be enthusiastic about using it.
Journal of Telemedicine and Telecare 02/2008; 14(3):114-6. · 1.21 Impact Factor
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ABSTRACT: The development of the Internet has created new opportunities for health care provision, including its use as a tool to aid the self-management of chronic conditions. We studied stakeholder reactions to an Internet-based "virtual clinic," which would allow people with diabetes to communicate with their health care providers, find information about their condition, and share information and support with other users.
The aim of the study was to present the results of a detailed consultation with a variety of stakeholder groups in order to identify what they regard as the desirable, important, and feasible characteristics of an Internet-based intervention to aid diabetes self-management.
Three focus groups were conducted with 12 people with type 1 diabetes who used insulin pumps. Participants were recruited through a local diabetes clinic. One-on-one interviews were conducted with 5 health care professionals from the same clinic (2 doctors, 2 nurses, 1 dietitian) and with 1 representative of an insulin pump company. We gathered patient consensus via email on the important and useful features of Internet-based systems used for other chronic conditions (asthma, epilepsy, myalgic encephalopathy, mental health problems). A workshop to gather expert consensus on the use of information technology to improve the care of young people with diabetes was organized.
Stakeholder groups identified the following important characteristics of an Internet-based virtual clinic: being grounded on personal needs rather than only providing general information; having the facility to communicate with, and learn from, peers; providing information on the latest developments and news in diabetes; being quick and easy to use. This paper discusses these characteristics in light of a review of the relevant literature. The development of a virtual clinic for diabetes that embodies these principles, and that is based on self-efficacy theory, is described.
Involvement of stakeholders is vital early in the development of a complex intervention. Stakeholders have clear and relevant views on what a virtual clinic system should provide, and these views can be captured and synthesized with relative ease. This work has led to the design of a system that is able to meet user needs and is currently being evaluated in a pilot study.
Journal of Medical Internet Research 02/2007; 9(3):e23. · 4.41 Impact Factor
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ABSTRACT: As Internet use grows, health interventions are increasingly being delivered online. Pioneering researchers are using the networking potential of the Internet, and several of them have evaluated these interventions.
The objective was to review the reasons why health interventions have been delivered on the Internet and to reflect on the work of the pioneers in this field in order to inform future research.
We conducted a qualitative systematic review of peer-reviewed evaluations of health interventions delivered to a known client/patient group using networked features of the Internet. Papers were reviewed for the reasons given for using the Internet, and these reasons were categorized.
We included studies evaluating 28 interventions plus 9 interventions that were evaluated in pilot studies. The interventions were aimed at a range of health conditions. Reasons for Internet delivery included low cost and resource implications due to the nature of the technology; reducing cost and increasing convenience for users; reduction of health service costs; overcoming isolation of users; the need for timely information; stigma reduction; and increased user and supplier control of the intervention. A small number of studies gave the existence of Internet interventions as the only reason for undertaking an evaluation of this mode of delivery.
One must remain alert for the unintended effects of Internet delivery of health interventions due to the potential for reinforcing the problems that the intervention was designed to help. Internet delivery overcomes isolation of time, mobility, and geography, but it may not be a substitute for face-to-face contact. Future evaluations need to incorporate the evaluation of cost, not only to the health service but also to users and their social networks. When researchers report the outcomes of Internet-delivered health care interventions, it is important that they clearly state why they chose to use the Internet, preferably backing up their decision with theoretical models and exploratory work. Evaluation of the effectiveness of a health care intervention delivered by the Internet needs to include comparison with more traditional modes of delivery to answer the following question: What are the added benefits or disadvantages of Internet use that are particular to this mode of delivery?
Journal of Medical Internet Research 02/2006; 8(2):e10. · 4.41 Impact Factor
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ABSTRACT: Background: The development of the Internet has created new opportunities for health care provision, including its use as a tool to aid the self-management of chronic conditions. We studied stakeholder reactions to an Internet-based “virtual clinic,” which would allow people with diabetes to communicate with their health care providers, find information about their condition, and share information and support with other users. Objective: The aim of the study was to present the results of a detailed consultation with a variety of stakeholder groups in order to identify what they regard as the desirable, important, and feasible characteristics of an Internet-based intervention to aid diabetes self-management. Methods: Three focus groups were conducted with 12 people with type 1 diabetes who used insulin pumps. Participants were recruited through a local diabetes clinic. One-on-one interviews were conducted with 5 health care professionals from the same clinic (2 doctors, 2 nurses, 1 dietitian) and with 1 representative of an insulin pump company. We gathered patient consensus via email on the important and useful features of Internet-based systems used for other chronic conditions (asthma, epilepsy, myalgic encephalopathy, mental health problems). A workshop to gather expert consensus on the use of information technology to improve the care of young people with diabetes was organized. Results: Stakeholder groups identified the following important characteristics of an Internet-based virtual clinic: being grounded on personal needs rather than only providing general information; having the facility to communicate with, and learn from, peers; providing information on the latest developments and news in diabetes; being quick and easy to use. This paper discusses these characteristics in light of a review of the relevant literature. The development of a virtual clinic for diabetes that embodies these principles, and that is based on self-efficacy theory, is described. Conclusions: Involvement of stakeholders is vital early in the development of a complex intervention. Stakeholders have clear and relevant views on what a virtual clinic system should provide, and these views can be captured and synthesized with relative ease. This work has led to the design of a system that is able to meet user needs and is currently being evaluated in a pilot study.
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ABSTRACT: This paper was published as Patient-Centered E-Health / ed. E. Vance Wilson; IGI Global, 2009, pp. 115-126. It is available from http://www.igi-global.com/Bookstore/TitleDetails.aspx?TitleId=832. Doi: 10.4018/978-1-60566-016-5.ch009 Metadata only entry This chapter deals with the principles and practice of patient and public involvement in e-health research, and discusses some of the issues raised. In the first part of this chapter, we discuss the problems of defining an “e-health consumer,” and discuss why, how and when to involve consumers in e-health research. We also set out principles to guide effective consumer involvement, and the benefits that this can bring in the e-health arena. In the second part of this chapter, we describe how consumers were successfully involved, through a variety of methods, in the development and evaluation of an Internet-based intervention to aid diabetes self-management. Patient and public involvement in research is not the same as undertaking research on patients or the public. It is about understanding, incorporating and benefiting from the relevant consumer perspective, at various levels, throughout the stages of a project.
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ABSTRACT: This paper was published as Journal of Telemedicine and Telecare, 2007, 13 (supplement 1), pp. 1-2. It is available from http://jtt.rsmjournals.com/cgi/content/abstract/13/suppl_1/1. Doi: 10.1258/135763307781645220 Metadata only entry We designed a study to evaluate the feasibility, acceptability and effectiveness of an Internet-based self-management system for diabetes. The Virtual Clinic allows a patient to communicate with health professionals, find information and participate in peer-to-peer discussions. Three focus groups were conducted with patients, and there were six interviews with health-care professionals and an expert workshop to gather consensus. All the people who were consulted were enthusiastic about the Virtual Clinic concept and perceived clear benefits in terms of improved self-management. The principal study design problems were: (1) choice and design of intervention; (2) outcome measures; (3) how much of the study is Internet-based; (4) data security and confidentiality. Our results suggest that a well-designed intervention study is possible. It will allow the evaluation of the feasibility, acceptability and effectiveness of the intervention in the context of the UK National Health Service.
