Lassere M, Johnson K, Gellately W, Rappo J, Iedema R, Parle A, Rubin G, Stelter K
Abstract
Background and Objectives
The AMQuIP project was conducted in 2005-2006. In this project a set of medical professional and a parallel set of consumer quality indicators were developed for patients with rheumatoid arthritis for benchmarking, to facilitate quality improvement and improve patient care. To facilitate uptake of these indicators two new patient-held tools were developed: a passport-sized, paper-based portable health file and a portable, synchronized electronic health file physically located on a USB drive. The objectives of this pilot project were to (i) develop the tools and (ii) evaluate their short term uptake and other associated outcomes.
Methods
The pilot was a prospective quota allocated trial in patients with rheumatoid arthritis, comparing an portable, synchronized electronic personal health file carried on a USB chip, two paper-based personal health files (NSWs’ My Health Record) and a paper-based passport sized book version of the electronic PHF to a control group (no PHF). Outcomes included uptake of rheumatoid arthritis guidelines (professional and lay versions), change in practice, patient and health providers perceptions of guideline use and patient-held paper and electronic personal health files. Quantitative and qualitative methods were used in this pilot. All tools (rheumatoid arthritis quality indicators, USB chip-based electronic personal health file and paper-based versions were developed during this project, using rapid-prototyping and iterative quality improvement methodology, then evaluated in a controlled setting the community.
Results
Both paper-based and electronic-files contained a core-data set of information which included a directory of health care providers, medical conditions, medications (current and past), investigations, and visit summaries. This core-data functioned as a subset of a more comprehensive electronic or paper-based medical record. It was structured to be patient- and doctor friendly and is not primarily a physician record. The portable health file was updated by the doctor at each visit and could also be updated by patient between visits if necessary.
The PHF software is stored on a USB chip. Using Eclipse (an integrated development environment), the software is written in Java, requiring a Java Runtime version 1.5 to execute. The runtime currently needs to be installed on the machine separately from the software. The patient information is stored at separate files for each patient; in the form of xml files encoded using a standard compression algorithm.
Patient information includes audit information for each modification including the computer host and login name identification of the doctor and date. The combination provides identification and nonrepudiation for the patient data, and user’s ordinary authentication via the host computer operating system. Hardware and software are inexpensive and maintenance costs are small. The USB drive was robust, fast, and stored large data files as well as all required software.
Seven focus groups were held (total of 43 patients, 12 GPs). The main themes that emerged from the focus groups were that patients with health problems, particular older adults believed that communication among health professional about their medical history outweighed any potential privacy concerns.
The patient-held tools were tested by 76 patients, 71 GPs and 4 rheumatologists. Approximately 80% of patients would recommend a PHF to others, 95% liked to idea of carrying their own health data using a PHF and only 13% were often or sometimes concerned about privacy. Just over 55% of the patients added information to the PHF. More than 70% of patients said it was easy to ask their GP to fill in their PHF and 90% said it was easy to ask their specialist. About 75% patients mostly perceived the PHR as a means of carrying information between health care providers. About 80% of GPs were happy to use a PHF in the future and only 15% of GPs were concerned regarding confidentiality and accuracy. In the trial 10% of GPs did not wish to participate and some dissuaded their patients from continuing in the trial. Main GP reasons for non-participation were privacy and confidentiality. Almost all of these GPs had practices outside the area health service that was conducting the project.
Discussion and Conclusions
The AMQuIP project was a small community-based health care pilot study in one model of disease. We evaluated “proof-of-concept” practicalities that would be encountered in randomized controlled trial in Australia, success of recruitment procedures, feasibility of subject compliance with tools and assessments, quality of the data collection forms, and use in sample size estimations. However further evaluation is needed from stakeholders and the actual improved services and improvement in clinically important patient outcomes (hospitalisations, serious morbidity and death) need to be demonstrated. Factors retarding the anticipated uptake have included technology immaturity, health administrator focus on financial systems, application "unfriendliness," and physician resistance need to be further evaluated. Further work is required to ensure that the portable health file meets national and international standards, is fully compatible with all operating systems and platforms, can export and import to all other medical record software systems including administrative databases, and includes SNOWMED and other medical terminology functionality.
The project team has been awarded a NHMRC funded 5 year project grant to further develop the paper and electronic portable health file and to conduct a 1000 patient pragmatic randomized controlled trial. This trial will determine whether use of a patient-held portable health file in older Australian men and women (>60 years of age) with at least two medical problems that require specialty referral care, improves their quality of life, reduces their risk of hospitalisation and of death. Other outcomes including patient and healthcare provider acceptability/satisfaction with the electronic portable health fine (E-PHF) and with a paper portable health file (P-PHF) will also be evaluated.