Evaluation of Internet-Based Technology for Supporting Self-Care: Problems Encountered by Patients and Caregivers When Using Self-Care Applications

“Background: Prior studies have shown that many patients are interested in Internet-based technology that enables them to control their own care. As a result, innovative eHealth services are evolving rapidly, including self-assessment tools and secure patient-caregiver email communication. It is interesting to explore how these technologies can be used for supporting self-care.
Objective: The aim of this study was to determine user-centered criteria for successful application of Internet-based technology used in primary care for supporting self-care.
Methods: We conducted scenario-based tests combined with in-depth interviews among 14 caregivers and 14 patients/consumers to describe the use of various self-care applications and the accompanying user problems. We focused on the user-friendliness of the applications, the quality of care provided by the applications, and the implementation of the applications in practice.
Results: Problems with the user-friendliness of the self-care applications concerned inadequate navigation structures and search options and lack of feedback features. Patients want to retrieve health information with as little effort as possible; however, the navigation and search functionalities of the applications appeared incapable of handling patients’ health complaints efficiently. Among caregivers, the lack of feedback and documentation possibilities caused inconvenience. Caregivers wanted to know how patients acted on their advice, but the applications did not offer an adequate feedback feature. Quality of care problems were mainly related to insufficient tailoring of information to patients’ needs and to efficiency problems. Patients expected personalized advice to control their state of health, but the applications failed to deliver this. Language (semantics) also appeared as an obstacle to providing appropriate and useful self-care advice. Caregivers doubted the reliability of the computer-generated information and the efficiency and effectiveness of secure email consultation. Legal or ethical issues with respect to possible misuse of email consultation also caused concerns. Implementation problems were mainly experienced by caregivers due to unclear policy on email consultation and the lack of training for email consultations.
Conclusions: Patients’ and caregivers’ expectations did not correspond with their experiences of the use of the Internet-based applications for self-care. Patients thought that the applications would support them in solving their health problems. Caregivers were more reserved about the applications because of medico-legal concerns about misuse. However, the applications failed to support self-care because eHealth is more than just a technological intervention. The design of the applications should include a way of thinking about how to deliver health care with the aid of technology. The most powerful application for self-care was secure email consultation, combined with a suitable triage mechanism to empower patients’ self-awareness. Future research should focus on the effectiveness of such Web-based triage mechanisms for medical complaints and on the development of interactive features to enhance patients’ self-care.”
Article
Nijland N, van Gemert-Pijnen J, Boer H, Steehouder MF, Seydel ER, J Med Internet Res 2008;10(2):e13

The Transition from ‘Informed Patient’ Care to ‘Patient Informed’ Care

Abstract:
We are in the midst of a real change in the application of information technology to support the delivery of healthcare. We are seeing a shift from the ‘informed patient’ which has resulted from improved access to healthcare information, primarily from the Web, to the ‘participative patient’ as we move into Web 2.0 territory.
The last decade has seen significant strides in the application of healthcare information to support patient care including:

• Increased access to healthcare related information by the patient through access to healthcare information on the Web (1.0).
• The development of electronic patient/health records.
• Improved access to knowledge for care professionals has enabled the dissipation of professional clinical skills with the introduction of nurse practioners and increased use of therapies.
• Improved access to patient related information across disciplines is beginning to enable the shift from acute based to community based care.
• The introduction of home care technologies has enabled self monitoring in supporting self care.
• There are also developments in the way care is provided with an increasing diversity of healthcare providers with the challenges this has presented in exchanging patient related information to support continuity of care.

We are now at another major turning point that could present greater challenges for healthcare professionals, organisations and the patient or client. These developments include:

• The application of information sharing services commonly referred to as Web 2.0. As a result we are seeing a transition from the ‘informed patient’ to the ‘participative patient’ that will present increasing challenges for healthcare professionals and healthcare organisations in adapting care to embrace this evolution.
• New entrants to the ehealth market are now emerging such as Google and Microsoft who are competing to ‘own’ the ‘healthcare consumer’.
• Open source solutions for EPR/EHRs are now emerging that will challenge the traditional mechanisms for delivery of organisational healthcare solutions.
• Technologies that have been growing in use and demand over the past decade are now being applied to healthcare including digital TV and mobile computing.

What then are the challenges for patients, healthcare organisations and information service providers as we move from the passive role of the patient in the provision of their care to a more participative role?

Ruth GARDINER
HealthSystems Consultants Ltd

To be published in “Medical and Care Compunetics 5″, IOSPress, 2008.
To be presented at the ICMCC Event 2008

Stakeholder Perspectives on the Development of a Virtual Clinic for Diabetes Care: Qualitative Study

“The aim of the study was to present the results of a detailed consultation with a variety of stakeholder groups in order to identify what they regard as the desirable, important, and feasible characteristics of an Internet-based intervention to aid diabetes self-management.”
“Involvement of stakeholders is vital early in the development of a complex intervention. Stakeholders have clear and relevant views on what a virtual clinic system should provide, and these views can be captured and synthesized with relative ease. This work has led to the design of a system that is able to meet user needs and is currently being evaluated in a pilot study.”
Article
Armstrong N, Hearnshaw H, Powell J, Dale J, J Med Internet Res 2007;9(3):e23

Engaging Patients in their Healthcare

“Data from surveys carried out in the UK, Australia, Canada, New Zealand, Germany and the USA; and from England, Scotland, Wales and Northern Ireland; were used to compare performance in each country in relation to six indicators of patient engagement:

• quality of doctor-patient communication;
• access to alternative sources of information and advice;
• provision of preventive care and advice;
• informed choice of provider;
• risk communication and involvement in treatment decisions;
• support for self-care and self-management.”

Angela Coulter, Picker Institute Europe, April 2006

Report

Sharable EHR Systems in Finland

Kari Harno and Pekka Ruotsalainen
Helsinki University Central Hospital, Hospital District of Helsinki and Uusimaa;
National Research and Development Centre for Welfare and Health, Finland

Abstract

In Finland, the shared record is a virtual electronic health record (EHR). It consists of health data generated, maintained and preserved by different health care service providers. Two different kinds of technologies for integrating regional EHR-systems are applied, but mainly by using a common middleware. Services provided by this middleware are EHR location services using a link repository and combining EHR-viewing services with security management services including consent management and identification services for health professionals. The Regional Health Information Organization (UUMA) approach is based on a stepwise implementation of integrated regional healthcare services to create a virtually borderless healthcare organization - a patient centered virtual workspace. In the virtual workspace multi-professional teams and patients collaborate and share information regardless of time and place. Presently the regional health information network (RHIN) is comprised of three integrated services between primary, secondary and tertiary care within the county of Uusimaa. The regional healthcare modules consist of an (1) eReferral network, (2) integrated EHR service between health care professionals and (3) PACS system. The eReferral between primary and secondary care not only speeds up the transfer, but also offers an option for communication in the form of eConsultation between general practitioners and hospital specialists. By sharing information and knowledge remote eConsultations create a new working environment for integrated delivery of eServices between the health care providers. Over 100 000 eReferral messages (40 %) were transferred between health care providers. Interactive eConsultations enable supervised care leading to the reduction of outpatient visits and more timely appointments. One third (10/31) of the municipal health centers are connected to the clinics in the Helsinki University Central Hospital by the eReferral system. The link directory service extends the dimensions of networking between organizations by combining legacy systems within regional primary and secondary care. The link directory is an interface to diverse patient information systems, like HUSpacs, containing links pointing to the actual patient data located in remote information systems. The original data including images can be viewed with a web browser, but data can be accessed only with the patient’s informed consent. Currently the reference data base includes 9.5 million links from 1.4 million patients with over 2.000 daily users. We aim to create a new working environment for professionals by incorporation of innovative information and communication technology, new organization of work and re-engineering of workflows. In the near-future, the citizen will have an active role participating in decisions on his care, carrying out guided self-care and taking steps of pro-active prevention.