Towards an Accessible Personal Health Record

Patient empowerment frameworks, including personal health records (PHR), actively engage technology empowered citizens in their healthcare. Particularly today, with the current increase of chronic diseases, the high growth rate of the elderly and disabled populations and at the same time the much higher cross-border patient mobility,such systems may prove to be lifesaving, cost effective and time saving. Currently, there are many different online applications promoted as being functional, user-friendly and detailed enough to provide a complete and accurate summary of an individual’s medical history. However, it seems that most of the Web services available do not fully adhere to well known accessibility standards, such as those promoted by the W3C, thus turning them away from people with disability and elderly people, who most probably need them most. Additionally, support for mobile devices introduces additional obstacles to users with disability when trying to operate such services. This paper presents fundamental (design for all) guidelines for the successful implementation of an accessible ePHR service that can be operated by any patient including people with disabilities irrespective of the device they use to access this service

Patient Access to Electronic Health Records: Strengths, weaknesses and what’s needed to move forward

Electronic health records (EHRs) are desired by both physicians and patients, but the transition to and acceptance of sensitive health information online has been slow. This paper reviews the current literature on EHR adoption and outlines barriers, advantages and explicit steps for moving toward the EHR ubiquity. Potential benefits of EHRs to patients and physicians include reduced costs for patients, hospitals and insurance providers, patient empowerment, less errors in records and better health outcomes, but security and privacy concerns, cost of implementation and poor electronic records management system design have proved barriers to adoption

Using System Analysis and Personas for e-Health Interaction Design

Today, designers obtain more central roles in product and service development (Perks, Cooper, & Jones, 2005). They have to deal with increasingly complicated problems, like integrating the needs of various stakeholders while taking care about social, ethical and ecological consequences of their designs. To deal with this demanding design situation, they need to apply new methods to organize the available information and to negotiate the stakeholder’s perspectives. This paper describes how systems analysis supports the design process in a complex environment. In a case study, we demonstrate how this method enables designers to describe user requirements for complex design environments while considering the perspectives of various stakeholders. We present a design research project applying cybernetic systems analysis using the software ''System-Tools'' (Vester, 2002). Results from the analysis were taken to inform the design of an electronic patient record (EPR), considering the particularities of the German health care system. Based on the analysis, we developed a set of requirements for every stakeholder group, detailing the patients' perspective with persona descriptions. We then picked a main persona as reference for the EPR design. We describe the resulting design sketch and discuss the value of cybernetic systems analysis as a tool to deal with complex social environments. The result shows how the method helps designers to structure and organize information about the context and identify fruitful intervention opportunities for design. Keywords: E-Health; System Analysis, Cybernetics; Personas.</p

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

Group and individual time management tools: what you get is not what you need

Some studies of diaries and scheduling systems have considered how individuals use diaries with a view to proposing requirements for computerised time management tools. Others have focused on the criteria for success of group scheduling systems. Few have paid attention to how people use a battery of tools as an ensemble. This interview study reports how users exploit paper, personal digital assistants (PDAs) and a group scheduling system for their time management. As with earlier studies, we find many shortcomings of different technologies, but studying the ensemble rather than individual tools points towards a different conclusion: rather than aiming towards producing electronic time management tools that replace existing paper-based tools, we should be aiming to understand the relative strengths and weaknesses of each technology and look towards more seamless integration between tools. In particular, the requirements for scheduling and those for more responsive, fluid time management conflict in ways that demand different kinds of support

Motivating physical activity at work: using persuasive social media extensions for simple mobile devices

Powerful behaviour change programmes can be developed through a combination of very simple, accessible technology, and an understanding of the psychological processes that drive behaviour change. We present a study in which very basic digital pedometers were used to record the number of steps taken by participants over the course of a normal working day. A Facebook application, named Step Matron, was utilised to provide a social and competitive context for pedometer readings. We were particularly interested in whether interactions between users via the application more successfully motivated physical activity than simply recording daily step counts in a similar application. Ten participants (1 male), all nurses working in a UK hospital, used the application across two conditions over the course of the study. In the socially-enabled condition, participants could view each other’s step data and make comparisons and comments. In the non-social condition, participants could only view their own personal step data. A significant increase in step activity was observed in the socially enabled condition. Our findings highlight the potential of social media as a means for generating positive behaviour change. They also suggest that simple mobile devices can function as an inexpensive, accessible and powerful trigger towards this behaviour change without necessitating the use of overly complex and expensive mobile applications or device

Consolidated List of Requirements

This document is a consolidated catalogue of requirements for the Electronic Health Care Record (EHCR) and Electronic Health Care Record Architecture (EHCRA), gleaned largely from work done in the EU Framework III and IV programmes and CEN, but also including input from other sources including world-wide standardisation initiatives. The document brings together the relevant work done into a classified inventory of requirements to inform the on-going standardisation process as well as act as a guide to future implementation of EHCRA-based systems. It is meant as a contribution both to understanding of the standard and to the work that is being considered to improve the standard. Major features include the classification into issues affecting the Health Care Record, the EHCR, EHCR processing, EHCR interchange and the sharing of health care information and EHCR systems. The principal information sources are described briefly. It is offered as documentation that is complementary to the four documents of the ENV 13606 Parts I-IV produced by CEN Pts 26,27,28,29. The requirements identified and classified in this deliverable are referenced in other deliverables