Summary care record early adopter programme: an independent evaluation by University College London.

Benefits The main potential benefit of the SCR is considered to be in emergency and unscheduled care settings, especially for people who are unconscious, confused, unsure of their medical details, or unable to communicate effectively in English. Other benefits may include improved efficiency of care and avoidance of hospital admission, but it is too early for potential benefits to be verified or quantified. Progress As of end April 2008, the SCR of 153,188 patients in the first two Early Adopter sites (Bolton and Bury) had been created. A total of 614,052 patients in four Early Adopter sites had been sent a letter informing them of the programme and their choices for opting out of having a SCR. Staff attitudes and usage The evaluation found that many NHS staff in Early Adopter sites (which had been selected partly for their keenness to innovate in ICT) were enthusiastic about the SCR and keen to see it up and running, but a significant minority of GPs had chosen not to participate in the programme and others had deferred participation until data quality improvement work was completed. Whilst 80 per cent of patients interviewed were either positive about the idea of having a SCR or ?did not mind?, others were strongly opposed ?on principle?. Staff who had attempted to use the SCR when caring for patients felt that the current version was technically immature (describing it as ?clunky? and ?complicated?), and were looking forward to a more definitive version of the technology. A comparable technology (the Emergency Care Summary) introduced in Scotland two years ago is now working well, and over a million records have been accessed in emergency and out-of-hours care. Patient attitudes and awareness Having a SCR is optional (people may opt out if they wish, though fewer than one per cent of people in Early Adopter sites have done so) and technical security is said to be high via a system of password protection and strict access controls. Nevertheless, the evaluation showed that recent stories about data loss by government and NHS organisations had raised concerns amongst both staff and patients that human fallibility could potentially jeopardise the operational security of the system. Despite an extensive information programme to inform the public in Early Adopter sites about the SCR, many patients interviewed by the UCL team were not aware of the programme at all. This raises important questions about the ethics of an ?implied consent? model for creating the SCR. The evaluation recommended that the developers of the SCR should consider a model in which the patient is asked for ?consent to view? whenever a member of staff wishes to access their record. Not a single patient interviewed in the evaluation was confident that the SCR would be 100 per cent secure, but they were philosophical about the risks of security breaches. Typically, people said that the potential benefit of a doctor having access to key medical details in an emergency outweighed the small but real risk of data loss due to human or technical error. Even patients whose medical record contained potentially sensitive data such as mental health problems, HIV or drug use were often (though not always) keen to have a SCR and generally trusted NHS staff to treat sensitive data appropriately. However, they and many other NHS patients wanted to be able to control which staff members were allowed to access their record at the point of care. Some doctors, nurses and receptionists, it seems, are trusted to view a person?s SCR, whereas others are not, and this is a decision which patients would like to make in real time

The devil's in the detail: Final report of the independent evaluation of the Summary Care Record and HealthSpace programmes

professionals, NHS staff, service users, citizens, academics and evaluation scholars. It should be read in conjunction with our Year 1 reports on the SCR programme (May 2008) 1 and data quality (May 2008). 2 2. The SCR is an electronic summary of key health data, currently drawn from a patient’s GP-held electronic record and accessible over a secure Internet connection by authorised healthcare staff. It is one of a suite of innovations being introduced as part of the National Programme for IT in the English National Health Service (NHS) and delivered via a central ‘Spine’. Policy documents published in 2005-8 anticipated a number of benefits of the SCR, including: 3-6 a. Better care (i.e. the SCR would improve clinical decision-making); b. Safer care (i.e. the SCR would reduce risk of harm, especially medication errors); c. More efficient care (e.g. the SCR would make consultations quicker); d. More equitable care (i.e. the SCR would be particularly useful in patients unable to communicate or advocate for themselves); e. Reduction in onward referral (e.g. the SCR would avoid unnecessary ambulanc

Expectation of clinical decision support systems: a survey study among nephrologist end-users

Background Chronic kidney disease (CKD), a major public health problem with differing disease etiologies, leads to complications, comorbidities, polypharmacy, and mortality. Monitoring disease progression and personalized treatment efforts are crucial for long-term patient outcomes. Physicians need to integrate different data levels, e.g., clinical parameters, biomarkers, and drug information, with medical knowledge. Clinical decision support systems (CDSS) can tackle these issues and improve patient management. Knowledge about the awareness and implementation of CDSS in Germany within the field of nephrology is scarce. Purpose Nephrologists’ attitude towards any CDSS and potential CDSS features of interest, like adverse event prediction algorithms, is important for a successful implementation. This survey investigates nephrologists’ experiences with and expectations towards a useful CDSS for daily medical routine in the outpatient setting. Methods The 38-item questionnaire survey was conducted either by telephone or as a do-it-yourself online interview amongst nephrologists across all of Germany. Answers were collected and analysed using the Electronic Data Capture System REDCap, as well as Stata SE 15.1, and Excel. The survey consisted of four modules: experiences with CDSS (M1), expectations towards a helpful CDSS (M2), evaluation of adverse event prediction algorithms (M3), and ethical aspects of CDSS (M4). Descriptive statistical analyses of all questions were conducted. Results The study population comprised 54 physicians, with a response rate of about 80–100% per question. Most participants were aged between 51–60 years (45.1%), 64% were male, and most participants had been working in nephrology out-patient clinics for a median of 10.5 years. Overall, CDSS use was poor (81.2%), often due to lack of knowledge about existing CDSS. Most participants (79%) believed CDSS to be helpful in the management of CKD patients with a high willingness to try out a CDSS. Of all adverse event prediction algorithms, prediction of CKD progression (97.8%) and in-silico simulations of disease progression when changing, e. g., lifestyle or medication (97.7%) were rated most important. The spectrum of answers on ethical aspects of CDSS was diverse. Conclusion This survey provides insights into experience with and expectations of out-patient nephrologists on CDSS. Despite the current lack of knowledge on CDSS, the willingness to integrate CDSS into daily patient care, and the need for adverse event prediction algorithms was high.Open Access funding enabled and organized by Projekt DEAL.Universitätsklinikum Freiburg (8975

'Never heard of it'- understanding the public's lack of awareness of a new electronic patient record.

BACKGROUND: The introduction of electronic patient records that are accessible by multiple providers raises security issues and requires informed consent - or at the very least, an opportunity to opt out. Introduction of the Summary Care Record (SCR) (a centrally stored electronic summary of a patient's medical record) in pilot sites in the UK was associated with low awareness, despite an intensive public information programme that included letters, posters, leaflets, and road shows. AIM: To understand why the public information programme had limited impact and to learn lessons for future programmes. METHODS: Linguistic and communications analysis of components of the programme, contextualized within a wider mixed-method case study of the introduction of the SCR in pilot sites. Theoretical insights from linguistics and communication studies were applied. RESULTS: The context of the SCR pilots and the linked information programme created inherent challenges which were partially but not fully overcome by the efforts of campaigners. Much effort was put into designing the content of a mail merge letter, but less attention was given to its novelty, linguistic style, and rhetorical appeal. Many recipients viewed this letter as junk mail or propaganda and discarded it unread. Other components of the information programme were characterized by low visibility, partly because only restricted areas were participating in the pilot. Relatively little use was made of interpersonal communication channels. CONCLUSION: Despite ethical and legal imperatives, informed consent for the introduction of shared electronic records may be difficult to achieve through public information campaigns. Success may be more likely if established principles of effective mass and interpersonal communication are applied

Adoption, non-adoption, and abandonment of a personal electronic health record: case study of HealthSpace.

OBJECTIVE: To evaluate the policy making process, implementation by NHS organisations, and patients' and carers' experiences of efforts to introduce an internet accessible personal electronic health record (HealthSpace) in a public sector healthcare system. DESIGN: Mixed method, multilevel case study. SETTING: English National Health Service; the basic HealthSpace technology (available throughout England) and the advanced version (available in a few localities where this option had been introduced) were considered. MAIN OUTCOME MEASURES: National statistics on invitations sent, HealthSpace accounts created, and interviews and ethnographic observation of patients and carers. Data analysis was informed by a socio-technical approach which considered macro and micro influences on both adoption and non-adoption of innovations, and by the principles of critical discourse analysis. PARTICIPANTS: 56 patients and carers (of whom 21 opened a basic HealthSpace account, 20 had diabetes but were not initially using HealthSpace, and 15 used advanced HealthSpace accounts to exchange messages with their general practitioner), 3000 pages of documents (policies, strategies, business plans, minutes of meetings, correspondence), observational field notes, and 160 interviews with policy makers, project managers, and clinical staff. RESULTS: Between 2007 and October 2010, 172 950 people opened a basic HealthSpace account. 2913 (0.13% of those invited) opened an advanced account, compared with 5-10% of the population anticipated in the original business case. Overall, patients perceived HealthSpace as neither useful nor easy to use and its functionality aligned poorly with their expectations and self management practices. Those who used email-style messaging were positive about its benefits, but enthusiasm beyond three early adopter clinicians was low, and fewer than 100 of 30 000 patients expressed interest. Policy makers' hopes that "deploying" HealthSpace would lead to empowered patients, personalised care, lower NHS costs, better data quality, and improved health literacy were not realised over the three year evaluation period. CONCLUSION: Unless personal electronic health records align closely with people's attitudes, self management practices, identified information needs, and the wider care package (including organisational routines and incentive structures for clinicians), the risk that they will be abandoned or not adopted at all is substantial. Conceptualising such records dynamically (as components of a socio-technical network) rather than statically (as containers for data) and employing user centred design techniques might improve their chances of adoption and use. The findings raise questions about how eHealth programmes in England are developed and approved at policy level

Patients' attitudes to the summary care record and HealthSpace: qualitative study.

OBJECTIVE: To document the views of patients and the public towards the summary care record (SCR, a centrally stored medical record drawn from the general practice record) and HealthSpace (a personal health organiser accessible through the internet from which people can view their SCR), with a particular focus on those with low health literacy, potentially stigmatising conditions, or difficulties accessing health care. DESIGN: 103 semistructured individual interviews and seven focus groups. SETTING: Three early adopter primary care trusts in England where the SCR and HealthSpace are being piloted. All were in areas of relative socioeconomic deprivation. PARTICIPANTS: Individual participants were recruited from general practice surgeries, walk-in centres, out of hours centres, and accident and emergency departments. Participants in focus groups were recruited through voluntary sector organisations; they comprised advocates of vulnerable groups and advocates of people who speak limited English; people with HIV; users of mental health services; young adults; elderly people; and participants of a drug rehabilitation programme. METHODS: Participants were asked if they had received information about the SCR and HealthSpace and about their views on shared electronic records in different circumstances. RESULTS: Most people were not aware of the SCR or HealthSpace and did not recall receiving information about it. They saw both benefits and drawbacks to having an SCR and described a process of weighing the former against the latter when making their personal choice. Key factors influencing this choice included the nature of any illness (especially whether it was likely to lead to emergency care needs); past and present experience of healthcare and government surveillance; the person's level of engagement and health literacy; and their trust and confidence in the primary healthcare team and the wider NHS. Overall, people with stigmatising illness were more positive about the SCR than people who claimed to speak for "vulnerable groups." Misconceptions about the SCR were common, especially confusion about what data it contained and who would have access to it. Most people were not interested in recording their medical data or accessing their SCR via HealthSpace, but some saw the potential for this new technology to support self management and lay care for those with chronic illness. CONCLUSION: Despite an extensive information programme in early adopter sites, the public remains unclear about current policy on shared electronic records, though most people view these as a positive development. The "implied consent" model for creating and accessing a person's SCR should be revisited, perhaps in favour of "consent to view" at the point of access