BackgroundElectronic health records are widely acknowledged to provide an important opportunity to anonymize patient-level health care data and collate across populations to support research. Nonetheless, in the wake of public and policy concerns about security and inappropriate use of data, conventional approaches toward data governance may no longer be sufficient to respect and protect individual privacy. One proposed solution to improve transparency and public trust is known as Dynamic Consent, which uses information technology to facilitate a more explicit and accessible opportunity to opt out. In this case, patients can tailor preferences about whom they share their data with and can change their preferences reliably at any time. Furthermore, electronic systems provide opportunities for informing patients about data recipients and the results of research to which their data have contributed.ObjectiveTo explore patient perspectives on the use of anonymized health care data for research purposes. To evaluate patient perceptions of a Dynamic Consent model and electronic system to enable and implement ongoing communication and collaboration between patients and researchers.MethodsA total of 26 qualitative interviews and three focus groups were conducted that included a video presentation explaining the reuse of anonymized electronic patient records for research. Slides and tablet devices were used to introduce the Dynamic Consent system for discussion. A total of 35 patients with chronic rheumatic disease with varying levels of illness and social deprivation were recruited from a rheumatology outpatient clinic; 5 participants were recruited from a patient and public involvement health research network.ResultsPatients were supportive of sharing their anonymized electronic patient record for research, but noted a lack of transparency and awareness around the use of data, making it difficult to secure public trust. While there were general concerns about detrimental consequences of data falling into the wrong hands, such as insurance companies, 39 out of 40 (98%) participants generally considered that the altruistic benefits of sharing health care data outweighed the risks. Views were mostly positive about the use of an electronic interface to enable greater control over consent choices, although some patients were happy to share their data without further engagement. Participants were particularly enthusiastic about the system as a means of enabling feedback regarding data recipients and associated research results, noting that this would improve trust and public engagement in research. This underlines the importance of patient and public involvement and engagement throughout the research process, including the reuse of anonymized health care data for research. More than half of patients found the touch screen interface easy to use, although a significant minority, especially those with limited access to technology, expressed some trepidation and felt they may need support to use the system.ConclusionsPatients fro...
There are widespread misconceptions and lack of knowledge among both patients and health professionals concerning the nature of gout and its recommended management, which leads to suboptimal care of the most common inflammatory joint disease and the only one for which we have 'curative' treatment.
With one million people treated every 36 hours, routinely collected UK National Health Service (NHS) health data has huge potential for medical research. Advances in data acquisition from electronic patient records (EPRs) means such data are increasingly digital and can be anonymised for research purposes. NHS England’s care.data initiative recently sought to increase the amount and availability of such data. However, controversy and uncertainty following the care.data public awareness campaign led to a delay in rollout, indicating that the success of EPR data for medical research may be threatened by a loss of patient and public trust. The sharing of sensitive health care data can only be done through maintaining such trust in a constantly evolving ethicolegal and political landscape. We propose that a dynamic consent model, whereby patients can electronically control consent through time and receive information about the uses of their data, provides a transparent, flexible, and user-friendly means to maintain public trust. This could leverage the huge potential of the EPR for medical research and, ultimately, patient and societal benefit.
ObjectivesTo examine in depth carers’ views and experiences of the delivery of patient care for people with dementia or delirium in an acute general hospital, in order to evaluate a specialist Medical and Mental Health Unit (MMHU) compared with standard hospital wards. This qualitative study complemented the quantitative findings of a randomised controlled trial.DesignQualitative semistructured interviews were conducted with carers of patients with cognitive impairment admitted to hospital over a 4-month period.SettingA specialist MMHU was developed in an English National Health Service acute hospital aiming to deliver the best-practice care. Specialist mental health staff were integrated with the ward team. All staff received enhanced training in dementia, delirium and person-centred care. A programme of purposeful therapeutic and leisure activities was introduced. The ward environment was optimised to improve patient orientation and independence. A proactive and inclusive approach to family carers was encouraged.Participants40 carers who had been recruited to a randomised controlled trial comparing the MMHU with standard wards.ResultsThe main themes identified related closely to family carers’ met or unmet expectations and included activities and boredom, staff knowledge, dignity and fundamental care, the ward environment and communication between staff and carers. Carers from MMHU were aware of, and appreciated, improvements relating to activities, the ward environment and staff knowledge and skill in the appropriate management of dementia and delirium. However, communication and engagement of family carers were still perceived as insufficient.ConclusionsOur data demonstrate the extent to which the MMHU succeeded in its goal of providing the best-practice care and improving carer experience, and where deficiencies remained. Neither setting was perceived as neither wholly good nor wholly bad; however, greater satisfaction (and less dissatisfaction) with care was experienced by carers from MMHU compared with standard care wards.
BackgroundThe increasing ownership of smartphones provides major opportunities for epidemiological research through self-reported and passively collected data.ObjectiveThis pilot study aimed to codesign a smartphone app to assess associations between weather and joint pain in patients with rheumatoid arthritis (RA) and to study the success of daily self-reported data entry over a 60-day period and the enablers of and barriers to data collection.MethodsA patient and public involvement group (n=5) and 2 focus groups of patients with RA (n=9) supported the codesign of the app collecting self-reported symptoms. A separate “capture app” was designed to collect global positioning system (GPS) and continuous raw accelerometer data, with the GPS-linking providing local weather data. A total of 20 patients with RA were then recruited to collect daily data for 60 days, with entry and exit interviews. Of these, 17 were loaned an Android smartphone, whereas 3 used their own Android smartphones.ResultsOf the 20 patients, 6 (30%) withdrew from the study: 4 because of technical challenges and 2 for health reasons. The mean completion of daily entries was 68% over 2 months. Patients entered data at least five times per week 65% of the time. Reasons for successful engagement included a simple graphical user interface, automated reminders, visualization of data, and eagerness to contribute to this easily understood research question. The main barrier to continuing engagement was impaired battery life due to the accelerometer data capture app. For some, successful engagement required ongoing support in using the smartphones.ConclusionsThis successful pilot study has demonstrated that daily data collection using smartphones for health research is feasible and achievable with high levels of ongoing engagement over 2 months. This result opens important opportunities for large-scale longitudinal epidemiological research.
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