Survey of patient and public perceptions of electronic health records for healthcare, policy and research: Study protocol

BACKGROUND: Immediate access to patients’ complete health records via electronic databases could improve healthcare and facilitate health research. However, the possible benefits of a national electronic health records (EHR) system must be balanced against public concerns about data security and personal privacy. Successful development of EHR requires better understanding of the views of the public and those most affected by EHR: users of the National Health Service. This study aims to explore the correlation between personal healthcare experience (including number of healthcare contacts and number and type of longer term conditions) and views relating to development of EHR for healthcare, health services planning and policy and health research. METHODS/DESIGN: A multi-site cross-sectional self-complete questionnaire designed and piloted for use in waiting rooms was administered to patients from randomly selected outpatients’ clinics at a university teaching hospital (431 beds) and general practice surgeries from the four primary care trusts within the catchment area of the hospital. All patients entering the selected outpatients clinics and general practice surgeries were invited to take part in the survey during August-September 2011. Statistical analyses will be conducted using descriptive techniques to present respondents’ overall views about electronic health records and logistic regression to explore associations between these views and participants’ personal circumstances, experiences, sociodemographics and more specific views about electronic health records. DISCUSSION: The study design and implementation were successful, resulting in unusually high response rates and overall recruitment (85.5%, 5336 responses). Rates for face-to-face recruitment in previous work are variable, but typically lower (mean 76.7%, SD 20). We discuss details of how we collected the data to provide insight into how we obtained this unusually high response rate

Hospital-based preventative interventions for people experiencing homelessness in high-income countries: A systematic review

BACKGROUND: People experiencing homelessness have significant unmet needs and high rates of unplanned care. We aimed to describe preventative interventions, defined in their broadest sense, for people experiencing homelessness in a hospital context. Secondary aims included mapping outcomes and assessing intervention effectiveness. METHODS: We searched online databases (MEDLINE, Embase, PsycINFO, HMIC, CINAHL, Web of Science, Cochrane Library) from 1999–2019 and conducted backward and forward citation searches to 31 December 2020 (PROSPERO CRD42019154036). We included quantitative studies in emergency and inpatient settings measuring health or social outcomes for adults experiencing homelessness in high income countries. We assessed rigour using the “Quality Assessment Tool for Quantitative Studies” and summarised findings using descriptive quantitative methods, a binomial test, a Harvest Plot, and narrative synthesis. We used PRISMA and SWiM reporting guidelines. FINDINGS: Twenty-eight studies identified eight intervention types: care coordination (n=18); advocacy, support, and outreach (n=13); social welfare assistance (n=13); discharge planning (n=12); homelessness identification (n=6); psychological therapy and treatment (n=6); infectious disease prevention (n=5); and screening, treatment, and referrals (n=5). The evidence strength was weak (n=16) to moderate (n=10), with two high quality randomised controlled trials. We identified six outcome categories with potential benefits observed for psychosocial outcomes, including housing (11/13 studies, 95%CI=54.6–98.1%, p=0.023), healthcare use (14/17, 56.6–96.2%, p=0.013), and healthcare costs (8/8, 63.1–100%, p=0.008). Benefits were less likely for health outcomes (4/5, 28.3–99.5%, p=0.375), integration with onward care (2/4, 6.8–93.2%, p=1.000), and feasibility/acceptability (5/6, 35.9–99.6%, p=0.219), but confidence intervals were very wide. We observed no harms. Most studies showing potential benefits were multi-component interventions. INTERPRETATION: Hospital-based preventative interventions for people experiencing homelessness are potentially beneficial, but more rigorous research is needed. In the context of high needs and extreme inequities, policymakers and healthcare providers may consider implementing multi-component preventative interventions. FUNDING: SL is supported by an NIHR Clinical Doctoral Research Fellowship (ICA-CDRF-2016-02-042). JD is supported by an NIHR School of Public Health Research Pre-doctoral Fellowship (NU-004252). RWA is supported by a Wellcome Clinical Research Career Development Fellowship (206602)

Management and control of tuberculosis control in socially complex groups: a research programme including three RCTs

Background: Socially complex groups, including people experiencing homelessness, prisoners and drug users, have very high levels of tuberculosis, often complicated by late diagnosis and difficulty in adhering to treatment. / Objective: To assess a series of interventions to improve tuberculosis control in socially complex groups. / Design: A series of observational surveys, evaluations and trials of interventions. / Setting: The pan-London Find&Treat service, which supports tuberculosis screening and case management in socially complex groups across London. / Participants: Socially complex groups with tuberculosis or at risk of tuberculosis, including people experiencing homelessness, prisoners, drug users and those at high risk of poor adherence to tuberculosis treatment. Interventions and main outcome measures We screened 491 people in homeless hostels and 511 people in prison for latent tuberculosis infection, human immunodeficiency virus, hepatitis B and hepatitis C. We evaluated an NHS-led prison radiographic screening programme. We conducted a cluster randomised controlled trial (2348 eligible people experiencing homelessness in 46 hostels) of the effectiveness of peer educators (22 hostels) compared with NHS staff (24 hostels) at encouraging the uptake of mobile radiographic screening. We initiated a trial of the use of point-of-care polymerase chain reaction diagnostics to rapidly confirm tuberculosis alongside mobile radiographic screening. We undertook a randomised controlled trial to improve treatment adherence, comparing face-to-face, directly observed treatment with video-observed treatment using a smartphone application. The primary outcome was completion of ≥ 80% of scheduled treatment observations over the first 2 months following enrolment. We assessed the cost-effectiveness of latent tuberculosis screening alongside radiographic screening of people experiencing homelessness. The costs of video-observed treatment and directly observed treatment were compared. / Results: In the homeless hostels, 16.5% of people experiencing homelessness had latent tuberculosis infection, 1.4% had current hepatitis B infection, 10.4% had hepatitis C infection and 1.0% had human immunodeficiency virus infection. When a quality-adjusted life-year is valued at £30,000, the latent tuberculosis screening of people experiencing homelessness was cost-effective provided treatment uptake was ≥ 25% (for a £20,000 quality-adjusted life-year threshold, treatment uptake would need to be > 50%). In prison, 12.6% of prisoners had latent tuberculosis infection, 1.9% had current hepatitis B infection, 4.2% had hepatitis C infection and 0.0% had human immunodeficiency virus infection. In both settings, levels of latent tuberculosis infection and blood-borne viruses were higher among injecting drug users. A total of 1484 prisoners were screened using chest radiography over a total of 112 screening days (new prisoner screening coverage was 43%). Twenty-nine radiographs were reported as potentially indicating tuberculosis. One prisoner began, and completed, antituberculosis treatment in prison. In the cluster randomised controlled trial of peer educators to increase screening uptake, the median uptake was 45% in the control arm and 40% in the intervention arm (adjusted risk ratio 0.98, 95% confidence interval 0.80 to 1.20). A rapid diagnostic service was established on the mobile radiographic unit but the trial of rapid diagnostics was abandoned because of recruitment and follow-up difficulties. We randomly assigned 112 patients to video-observed treatment and 114 patients to directly observed treatment. Fifty-eight per cent of those recruited had a history of homelessness, addiction, imprisonment or severe mental health problems. Seventy-eight (70%) of 112 patients on video-observed treatment achieved the primary outcome, compared with 35 (31%) of 114 patients on directly observed treatment (adjusted odds ratio 5.48, 95% confidence interval 3.10 to 9.68; p < 0.0001). Video-observed treatment was superior to directly observed treatment in all demographic and social risk factor subgroups. The cost for 6 months of treatment observation was £1645 for daily video-observed treatment, £3420 for directly observed treatment three times per week and £5700 for directly observed treatment five times per week. / Limitations: Recruitment was lower than anticipated for most of the studies. The peer advocate study may have been contaminated by the fact that the service was already using peer educators to support its work. / Conclusions: There are very high levels of latent tuberculosis infection among prisoners, people experiencing homelessness and drug users. Screening for latent infection in people experiencing homelessness alongside mobile radiographic screening would be cost-effective, providing the uptake of treatment was 25–50%. Despite ring-fenced funding, the NHS was unable to establish static radiographic screening programmes. Although we found no evidence that peer educators were more effective than health-care workers in encouraging the uptake of mobile radiographic screening, there may be wider benefits of including peer educators as part of the Find&Treat team. Utilising polymerase chain reaction-based rapid diagnostic testing on a mobile radiographic unit is feasible. Smartphone-enabled video-observed treatment is more effective and cheaper than directly observed treatment for ensuring that treatment is observed. / Future work: Trials of video-observed treatment in high-incidence settings are needed. / Trial registration: Current Controlled Trials ISRCTN17270334 and ISRCTN26184967. / Funding: This project was funded by the National Institute for Health Research (NIHR) Programme Grants for Applied Research programme and will be published in full in Programme Grants for Applied Research; Vol. 8, No. 9. See the NIHR Journals Library website for further project information

Patient/family views on data sharing in rare diseases: study in the European LeukoTreat project.: Survey assessing data sharing in leukodystrophies

International audienceThe purpose of this study was to explore patient and family views on the sharing of their medical data in the context of compiling a European leukodystrophies database. A survey questionnaire was delivered with help from referral centers and the European Leukodystrophies Association, and the questionnaires returned were both quantitatively and qualitatively analyzed. This study found that patients/families were strongly in favor of participating. Patients/families hold great hope and trust in the development of this type of research. They have a strong need for information and transparency on database governance, the conditions framing access to data, all research conducted, partnerships with the pharmaceutical industry, and they also need access to results. Our findings bring ethics-driven arguments for a process combining initial broad consent with ongoing information. On both, we propose key item-deliverables to database participants

Hospital readmission among people experiencing homelessness in England: a cohort study of 2772 matched homeless and housed inpatients

BackgroundInpatients experiencing homelessness are often discharged to unstable accommodation or the street, which may increase the risk of readmission.MethodsWe conducted a cohort study of 2772 homeless patients discharged after an emergency admission at 78 hospitals across England between November 2013 and November 2016. For each individual, we selected a housed patient who lived in a socioeconomically deprived area, matched on age, sex, hospital, and year of discharge. Counts of emergency readmissions, planned readmissions, and Accident and Emergency (A&amp;E) visits post-discharge were derived from national hospital databases, with a median of 2.8 years of follow-up. We estimated the cumulative incidence of readmission over 12 months, and used negative binomial regression to estimate rate ratios.ResultsAfter adjusting for health measured at the index admission, homeless patients had 2.49 (95% CI 2.29 to 2.70) times the rate of emergency readmission, 0.60 (95% CI 0.53 to 0.68) times the rate of planned readmission and 2.57 (95% CI 2.41 to 2.73) times the rate of A&amp;E visits compared with housed patients. The 12-month risk of emergency readmission was higher for homeless patients (61%, 95% CI 59% to 64%) than housed patients (33%, 95% CI 30% to 36%); and the risk of planned readmission was lower for homeless patients (17%, 95% CI 14% to 19%) than for housed patients (30%, 95% CI 28% to 32%). While the risk of emergency readmission varied with the reason for admission for housed patients, for example being higher for admissions due to cancers than for those due to accidents, the risk was high across all causes for homeless patients.ConclusionsHospital patients experiencing homelessness have high rates of emergency readmission that are not explained by health. This highlights the need for discharge arrangements that address their health, housing and social care needs.</jats:sec

Differences between women's and men's socioeconomic inequalities in health: longitudinal analysis of the Canadian population, 1994-2003

Background: Socioeconomic inequalities in health are ubiquitous in developed countries; however, whether these inequalities differ between women and men over time is less clear. Objective: To estimate the potentially different health effects of changes in socioeconomic position (SEP) on changes in health for working-age women and men over a 10-year period. Three main questions were addressed: (1) are there health differences between women and men over time, (2) do changes in SEP lead to health inequalities and (3) do changes in SEP impact health differently for women and men? Methods: Generalised estimating equations models were used to analyse cycles 1–5 of the Canadian National Population Health Survey for four measures of health, number of chronic conditions, self-rated health, functional health and mental distress, and three measures of SEP, income, education and employment status. Results: Health inequalities by sex/gender and by changes in SEP were present for all four outcomes in age-adjusted models; however, after controlling for time-dependent social structure, behaviour, and psychosocial factors the relationships persisted only for chronic conditions and psychological distress. There was no evidence that these effects differed, over time, between women and men. Conclusions: Men and women in this nationally representative sample of Canadians do not differentially embody changes in SEP, although both sex/gender and changes in SEP independently impact health.S Luchenski, A Quesnel-Vallée, J Lync

Smartphone-enabled video observed versus directly observed treatment for tuberculosis: a randomised controlled trial

Background Directly observed treatment (DOT) has been the standard of care for tuberculosis since the early 1990s, but delivery entails substantial inconvenience to patients and service providers. Remote video observed therapy (VOT) has recently been conditionally recommended by the WHO as an alternative to DOT. We tested whether levels of treatment observation were improved with VOT. Methods We conducted a randomised controlled trial of VOT (daily remote observation using a smartphone app) compared to DOT (three or five-weekly observation in home, community or clinic settings). Tuberculosis patients eligible for DOT at 22 clinics in England were allocated to trial arms by the SealedEnvelopeTM service using randomisation by minimisation. The primary outcome was completion of 80% or more scheduled treatment observations over the first two months following enrolment. Intention-to-treat and restricted (including only patients with at least one week of observation on allocated arm) analyses were conducted. The trial is registered with the ISRCTN, number ISRCTN26184967. Findings Between September 1, 2014 and October 1, 2016, we enrolled 226 patients; 112 randomised to VOT and 114 to DOT. Overall, 58% (131 of 226) had a history of homelessness, imprisonment, drug use, alcohol problems or mental health problems. Seventy percent of patients on VOT (78 of 112) had the primary outcome compared to 31% (35 of 114) of those on DOT (adjusted odds ratio 5·48; 95% confidence interval 3·10-9·68; p<0·0001). Drop-out during the first week of observation was less for VOT (10%, 11 of 112) than DOT (51%, 58 of 114). High observation levels were sustained throughout treatment for VOT patients, but declined rapidly for DOT patients. 4 Interpretation VOT is a more effective approach to observation of tuberculosis treatment than clinic- , community- or home-based DOT

Smartphone-enabled video-observed versus directly observed treatment for tuberculosis: a multicentre, analyst-blinded, randomised, controlled superiority trial

BACKGROUND: Directly observed treatment (DOT) has been the standard of care for tuberculosis since the early 1990s, but it is inconvenient for patients and service providers. Video-observed therapy (VOT) has been conditionally recommended by WHO as an alternative to DOT. We tested whether levels of treatment observation were improved with VOT. METHODS: We did a multicentre, analyst-blinded, randomised controlled superiority trial in 22 clinics in England (UK). Eligible participants were patients aged at least 16 years with active pulmonary or non-pulmonary tuberculosis who were eligible for DOT according to local guidance. Exclusion criteria included patients who did not have access to charging a smartphone. We randomly assigned participants to either VOT (daily remote observation using a smartphone app) or DOT (observations done three to five times per week in the home, community, or clinic settings). Randomisation was done by the SealedEnvelope service using minimisation. DOT involved treatment observation by a health-care or lay worker, with any remaining daily doses self-administered. VOT was provided by a centralised service in London. Patients were trained to record and send videos of every dose ingested 7 days per week using a smartphone app. Trained treatment observers viewed these videos through a password-protected website. Patients were also encouraged to report adverse drug events on the videos. Smartphones and data plans were provided free of charge by study investigators. DOT or VOT observation records were completed by observers until treatment or study end. The primary outcome was completion of 80% or more scheduled treatment observations over the first 2 months following enrolment. Intention-to-treat (ITT) and restricted (including only patients completing at least 1 week of observation on allocated arm) analyses were done. Superiority was determined by a 15% difference in the proportion of patients with the primary outcome (60% vs 75%). This trial is registered with the International Standard Randomised Controlled Trials Number registry, number ISRCTN26184967. FINDINGS: Between Sept 1, 2014, and Oct 1, 2016, we randomly assigned 226 patients; 112 to VOT and 114 to DOT. Overall, 131 (58%) patients had a history of homelessness, imprisonment, drug use, alcohol problems or mental health problems. In the ITT analysis, 78 (70%) of 112 patients on VOT achieved ≥80% scheduled observations successfully completed during the first 2 months compared with 35 (31%) of 114 on DOT (adjusted odds ratio [OR] 5·48, 95% CI 3·10-9·68; p<0·0001). In the restricted analysis, 78 (77%) of 101 patients on VOT achieved the primary outcome compared with 35 (63%) of 56 on DOT (adjusted OR 2·52; 95% CI 1·17-5·54; p=0·017). Stomach pain, nausea, and vomiting were the most common adverse events reported (in 16 [14%] of 112 on VOT and nine [8%] of 114 on DOT). INTERPRETATION: VOT was a more effective approach to observation of tuberculosis treatment than DOT. VOT is likely to be preferable to DOT for many patients across a broad range of settings, providing a more acceptable, effective, and cheaper option for supervision of daily and multiple daily doses than DOT. FUNDING: National Institute for Health Research