Jenny Ure

Piloting tele-monitoring in COPD: a mixed methods exploration of issues in design and implementation

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. AIMS To explore the perceptions of patients and professionals about the pilot implementation of the COPD tele-monitoring service. METHODS In-depth interviews were undertaken with patients and professionals before and after installation of the tele-monitoring equipment. Interviews were recorded, transcribed and thematically analysed. Data on use of healthcare resources were obtained from primary care records. RESULTS Twenty of the 27 patients in the pilot and 25 professionals participated. (n=55 interviews and one focus group). Patients were generally positive about the technology, which they perceived enabled earlier recognition of exacerbations and facilitated access to clinical advice. In contrast, clinicians had concerns about false positive symptom scores, difficulties in interpreting physiological data, overtreatment (reflected in a large increase in antibiotics and steroid prescribing), and an increased workload. CONCLUSIONS 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.

Experiences of patients and professionals participating in the HITS home blood pressure telemonitoring trial: a qualitative study

Objectives To 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. Design Qualitative study adopting a qualitative descriptive approach. Participants 25 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. Setting 6 primary care practices in Scotland. Method Data were collected via taped semistructured interviews. Initial thematic analysis was inductive. Multiple strategies were employed to ensure that the analysis was credible and trustworthy. Results Prior 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. Conclusions BP 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.

Barriers to knowledge sharing and stakeholder alignment in solar energy clusters: Learning from other sectors and regions

Regional and national policy makers have invested heavily in the cluster concept as a means of generating value for regions, particularly through the opportunities it may present for small regional enterprises as vehicles for growth and job creation. Economic theorists such as Porter, have shaped many of policies being adopted, from a macro-economic perspective, yet the process by which actors within the group are helped (or hindered) in aligning knowledge, expertise and interests is less well understood. The implementation and development of clusters is subject to a range of local socio-technical and socio-political dynamics, which also need to be taken account of if the anticipated benefits such as wealth creation and competitiveness are to be realised. The paper uses the outcomes of research in several regional clusters to highlight recurring issues associated with the alignment of distributed knowledge and stakeholder interests, and in particular, the interests of small and medium-sized enterprises (SMEs). The paper suggests that such barriers impact on the ability of clusters to create value for regions, particularly in relation to the opportunities for the creation of employment through local SMEs that are often cited as the basis for such investment. The authors argue for the provision of opportunities to sharing knowledge and expertise within and between clusters, to ensure early identification and collective engagement of stakeholders with issues on the ground, given the evidence that SME are under-represented in policy and strategy development, and that this undermines the competitiveness and the benefits of investment in regional clusters.

Acceptability and perceived barriers and facilitators to creating a national research register to enable 'direct to patient' enrolment into research: the Scottish Health Research Register (SHARE).

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.

Improving recruitment to clinical trials with a register of a million patients who agree to the use of their clinical records for research in the Scottish Health Research Register (SHARE)

The UKs technical ability to identify people eligible for medical research is not yet matched by a practical capability to approach them directly to ask them to consider participation in those studies. The consequence is that recruitment to research is more difficult than necessary and some projects fail. This makes Britain a less attractive location to undertake clinical research than it should be. In order to overcome this increasingly important obstacle, we wanted to develop a register of Scottish residents who wish to be considered for participation in a range of studies. This was an oral presentation given at the Clinical Trials Methodology conference 2011, 4-5 October 2011, Bristol, UK.

The Challenges of Developing a Collaborative Data and Compute Grid for Neurosciences

The three-year UK NeuroGrid project aims to develop a grid-based collaborative research environment to support the data and compute needs for a UK Neurosciences community. This paper describes the challenges in developing this architecture and details initial results from the development of its first prototype to support psychosis, dementia and stroke research and the social challenges of such a collaborative research project. The paper discusses approaches being taken to explore the collaborative science process to inform the requirements for follow on prototypes and methods utilized to develop an effective project team

Usability, the tri-wizard challenge: Recurring scenarios in the design of a healthgrid portal

Designing a HealthGrid portal combines particularly diverse challenges. The coordination of middleware and application layers is compounded by the difficulty of working across multiple specialist domains (neuroscience, magnetic resonance imaging, grid computing). The paper outlines some of the technical and human challenges encountered in the design of the NeuroGrid portal sharing clinical and image data in neuroscience.

Trans-regional Supply Chain Research Network: Developing Innovation Strategies Within and Between Regional Oil and Gas Clusters

Regional clusters at different stages in their life-cycle, provide opportunities for benchmarking regional and trans-regional strategies for innovation and change management. The paper reports on trans-regional knowledge transfer and benchmarking strategies used to enhance the alignment of SME, operators and other stakeholders in regional oil and gas clusters in two regions with ongoing projects. These were part of separate regional initiatives to enhance innovation and competitiveness in the supply chain through support for SMEs as key repositories of niche expertise and local knowledge relevant to the competitiveness of large operators in particular and to the cluster and the region in general. The Western Australia and the UK North Sea oil and gas clusters are used as examples to highlight the recurring sociotechnical problem: solution scenarios that arose in facilitating communication and coordination of diverse stakeholders within and across regional clusters. This is part of a wider set of case studies developed by the network in the oil and and gas and automotive supply chain sector.

Giving Them Something to Hate

There are recognized problems in the course of requirements analysis and design for heterogeneous, distributed, and dynamic systems. These are particularly evident where the context of future use is not yet clear to users, and where the implementation of these systems will reconfigure the costs, risks, and benefits for stakeholding groups. The article provides examples of the value of collaborative early prototyping with users in two such cases—the design of a HealthGrid portal and a telehealth portal. We provide further examples of the value of the prototype as a vehicle for engagement, a sandbox for exploring emerging opportunities, a landscape for negotiating the reconfiguration of roles and resources, and as an early warning system for early identification of emerging problems likely to impact on usability.

Creating Value Within and Between European Regions in the Photovoltaic Sector

The paper highlights emerging evidence that Europe is ideally positioned to leverage diverse local strengths and SME-led innovation in renewable energy clusters across regions. The authors highlight the outcomes of a series of action research studies looking at value-creation within and between regions in the traditional and the renewable energy sectors, and comment on the emergence of models of competitiveness dependent on local innovation that are consonant with the aim of the Lisbon treaty to create a competitive Europe based on knowledge-based innovation and support for SMEs.