Although popular with patients, professionals emphasised the importance of case selection and adequate training and support, both for patients and themselves, in order to maximise the expected benefits of the service, particularly with regard to enabling self-management.
Background: In 2008 NHS Lothian implemented a COPD tele-monitoring service incorporating a touch-screen computer for daily recording of symptoms and weekly oximetry and spirometry measurement. Data were transmitted by secure broadband link to a call centre where trained workers monitored data and contacted clinicians according to an agreed algorithm.
ObjectivesTo explore the experiences of patients and professionals taking part in a randomised controlled trial (RCT) of remote blood pressure (BP) telemonitoring supported by primary care. To identify factors facilitating or hindering the effectiveness of the intervention and those likely to influence its potential translation to routine practice.DesignQualitative study adopting a qualitative descriptive approach.Participants25 patients, 11 nurses and 9 doctors who were participating in an RCT of BP telemonitoring. A maximum variation sample of patients from within the trial based on age, sex and deprivation status of the practice was sought.Setting6 primary care practices in Scotland.MethodData were collected via taped semistructured interviews. Initial thematic analysis was inductive. Multiple strategies were employed to ensure that the analysis was credible and trustworthy.ResultsPrior to the trial, both patients and professionals were reluctant to increase the medication based on single BP measurements taken in the surgery. BP measurements based on multiple electronic readings were perceived as more accurate as a basis for action. Patients using telemonitoring became more engaged in the clinical management of their condition. Professionals reported that telemonitoring challenged existing roles and work practices and increased workload. Lack of integration of telemonitoring data with the electronic health record was perceived as a drawback.ConclusionsBP telemonitoring in a usual care setting can provide a trusted basis for medication management and improved BP control. It increases patients’ engagement in the management of their condition, but supporting telemetry and greater patient engagement can increase professional workloads and demand changes in service organisation. Successful service design in practice would have to take account of how additional roles and responsibilities could be realigned with existing work and data management practices. The embedded qualitative study was included in the protocol for the HITS trial registered with ISRCTN no. 72614272.
BackgroundDifficulties with recruitment pose a major, increasingly recognised challenge to the viability of research. We sought to explore whether a register of volunteers interested in research participation, with data linkage to electronic health records to identify suitable research participants, would prove acceptable to healthcare staff, patients and researchers.MethodsWe undertook a qualitative study in which a maximum variation sampling approach was adopted. Focus groups and interviews were conducted with patients, general practitioners (GP), practice managers and health service researchers in two Scottish health boards. Analysis was primarily thematic to identify a range of issues and concerns for all stakeholder groups.ResultsThe concept of a national research register was, in general, acceptable to all stakeholder groups and was widely regarded as beneficial for research and for society. Patients, however, highlighted a number of conditions which should be met in the design of a register to expedite confidence and facilitate recruitment. They also gave their perceptions on how a register should operate and be promoted, favouring a range of media. GPs and practice managers were primarily concerned with the security and confidentiality of patient data and the impact a register may have on their workload. Researchers were supportive of the initiative seeing advantages in more rapid access to a wider pool of patients. They did raise concerns that GPs may be able to block access to personal patient data held in general practice clinical systems and that the register may not be representative of the whole population.ConclusionsThis work suggests that patients, healthcare staff and researchers have a favourable view of the potential benefits of a national register to identify people who are potentially eligible and willing to participate in health related research. It has highlighted a number of issues for the developers to incorporate in the design of research registers.
We explore some recurring socio-technical problems encountered in the development of infrastructure for sharing and re-using data across sites and social scales for eHealth research. We link these problems to contradictions between underlying assumptions about data as a commodity whose reuse is not compromised when it is extracted from the context in which it has been captured, and the reality of data as entangled with, and constituted through, local practice. To illustrate these problems, we draw on the experiences of a number of HealthGrid projects developing infrastructures for data sharing and reuse, and trace the strategies that have evolved to address them. These experiences problematize the "one size fits all" model initially adopted by HealthGrids, and highlight the need for design and development strategies that are able to engage with local needs and thereby ensure that the technical infrastructure is properly aligned with the human infrastructure it is supposed to support.
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