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Improving Healthcare Quality through Health IT for Persons with Intellectual Disabilities Study |
PHR-ID Study Overview
Adults with intellectual disabilities (ID) face enormous obstacles in receiving health care and navigating the health care system. The resultant poor continuity of care can lead to greater morbidity in persons with ID. Given their complex health needs and the extreme fragmentation of care faced by individuals with ID, additional intervention is necessary to improve continuity of care and the sharing of health information. Electronic, integrated Personal Health Records (PHRs) hold promise in helping reshape healthcare by sharing health data with their caregivers and providers in an automated, patient-centered fashion. However, there are currently no established Internet-based PHRs available that meet the needs of this vulnerable population.
To address this problem, this study has refined and tested an existing PHR that will specifically meet the needs of persons with ID. The PHR will build upon ongoing work by the Special Olympics International in conjunction with HealthOne Global, known as the Personal Health Record for Adults with Intellectual Disabilities, or PHR-ID. The study team includes the developers of PHR-ID, quality improvement and medical informatics experts, and health services and intervention researchers.
There are two specific aims this study will accomplish:
Specific Aim 1: Adapt and refine an Internet-based Personal Health Record for adults with ID (PHR-ID) to share SO Healthy Athletes medical/health screening data with caregivers and healthcare providers.
Special Olympics (SO) has been partnering with vendor Health One Global for over 6 years to develop and deploy a web-based software system called the Healthy Athletes® software program (HAS). This electronic medical record system stores results from health screenings conducted at the SO Games on individuals with ID Work is currently underway to extend HAS to merge all SO medical-related data sources, and the first aim of this project is to make these data available to SO participants and their healthcare provider in a Personal Health Record (PHR-ID). A prototype has been developed and this first aim focuses on adapting and refining the prototype through internal system, alpha and beta testing. Focus groups have been conducted to incorporate input from key constituency groups (e.g., health care providers, caregivers). Input from these groups have helped to refine the PHR-ID content for persons with intellectual disabilities.
Specific Aim 2: Conduct a feasibility study to examine the usability and user satisfaction of the PHR-ID in sharing electronic health information derived from the SO Healthy Athletes screening program with caregivers and health care providers.
Successful implementation of health IT in non-traditional settings with vulnerable populations requires a systematic evaluation of user feasibility in ‘real world’ settings. Data collection has been split into two 12 week phases, the Pilot Phase and the Intervention Phase. The Pilot Phase has provided the opportunity to identify barriers to viewing the PHR-ID (e.g., incompatible computer operating systems, recessed computer USB ports). The research team has designed strategies to overcome many of the barriers found in the Pilot Phase in preparation for the next phase, the Intervention Phase, which is currently ongoing. Qualitative and quantitative analyses will examine the usability of the PHR-ID among caregivers of adults with ID and their primary care physicians. Usability and user satisfaction ratings are assessed with online surveys and semi-structured interviews. Barriers reported by caregivers in using the PHR-ID are assessed at the midpoint of the study. Findings from this feasibility study will be disseminated via national and state consumer and provider organizations serving adults with intellectual/developmental disabilities.
Developing a personal health record for people with ID has the potential to help improve the quality of care received in a manner that is highly consistent with these individuals' values and priorities. The relative low cost and ease of dissemination of the PHR-ID will increase the public health impact on state and local agencies responsible for the health care of adults with ID. If the feasibility study is successful, a future R21 or R18 application will be submitted to continue to explore the development and usefulness of the PHR-ID.
Conceptual Framework
The conceptual framework for this project is based on current, underlying advantages of integrated, interconnected, or networked Internet-based Personal Health Records. When PHRs provide ongoing transmission of health data to caregivers and providers, and subsequently turn such data into meaningful and actionable information, changes in health care delivery occur. There are four underlying assumptions associated with our conceptual framework. First, caregivers and Healthcare Providers (HCPs) (e.g., physicians, nurses, dentists) have a direct and important responsibility in managing the health of adults with ID. Second, caregivers, direct support staff who work in residential settings where people with ID live (e.g., group homes, intermediate care facilities, supported living facilities, small apartment dwellings) and health care providers need cost-effective, efficient solutions for monitoring and tracking the health status of the person with ID. Third, HCPs responsible for providing medical/health services to more than one adult with ID who live in congregate care settings (e.g., group homes, intermediate care facilities, supported living facilities) need efficient systems that merge data
from various sources (family members, case worker, direct support staff, multiple HCPs) into one health record to reduce time, costs and employee burden and the potential for error or mismanagement. And fourth, lack of knowledge/time/awareness among health care providers in maintaining current medical information, and limited or lack of understanding among caregivers regarding the health issues that may require regular attention leads to significant health problems and poor health care in this population.
In this study, an integrated PHR-ID improves the availability of autopopulated personal health information from a variety of data sources. The second column in the figure lists the health information that is currently being collected by Special Olympics International (SO). These are potentially valuable health data sources for caregivers and HCPs and include the following information: (1) GMS data: Games Management Software is used to obtain information on registration, demographics, emergency contact, health insurance, and medical history, which is required when an individual with ID registers for any Special Olympic event; (2) MES data: Medical Encounter Software is used including medical incidents at major Special Olympics games. Medical incidents include injuries, sun overexposure, illness, and side effects of not adhering to normal medication regimens; (3) HAS data: screening results from the Healthy Athletes screening program; (4) MedFest data: MedFest is the newest discipline in the Healthy Athletes program and provides a basic entrance or renewal physical to participate in the Games; (5) Initial medical data from a community based doctor when joining SO; and (6) 3 yearly renewal physical records.
Unlike the previous use of SO report cards, these electronic records do not rely on individuals or their caregivers to obtain, compile, and present health information. Instead, the PHR-ID automatically includes data without relying on others having the skills, resources, or patience for these activities.
Next, caregivers and relevant healthcare providers (e.g., physicians, nurses, dentists, etc.) are able to log in to the secure website to obtain medical information on the person with ID or to enter new information.
This will shift the health care locus of control to consumers (persons with ID and their caregivers) away from providers, to a more “shared” situation of care. This is consistent with the concept of an “advanced medical home” as designated by the American College of Physicians (ACP). Caregivers can “own” and jointly “manage” various sources of health information to assist providers in viewing a comprehensive health record. Future PHR-ID efforts will also support knowledge and behavioral promotion through online consumer health information, again sharing the “information” burden. Overall, giving caregivers more control in the decision making and planning processes of their adult child’s health will allow them to better manage their care, in turn prompting them to communicate with the appropriate health care provider when necessary. Benefits of the PHR-ID for the caregiver include greater perceived control over managing the health of their child and greater satisfaction with quality of care.
Finally, integrated PHRs improves the availability of patient health information at the “point of care,” allowing providers to access quality data in the clinical environment. For individuals with ID, this is critical, with poor patient-physician communication. Outcomes for the health care provider include improved time management by saving time using paper records, less error, and better continuity and delivery of health care. This may also avoid “telephone-tag” and other asynchronous methods of communicating health results from caregivers. The PHR-ID will give health care providers additional information on the individual’s medical history, health
screening results and other relevant health information that can help fill the gap of health care providers’ knowledge on the individual with ID. By establishing a personal health record, caregivers and health care providers can access it and add information as necessary to ensure continuity of care between various providers, settings and living arrangements.
Through these mechanisms, the integrated PHR-ID will potentially result in improvements in health care, beyond simply serving as data storage. PHR-ID development is driven by efforts in improving personal and caregiver involvement in health care responsibilities, while providing key access to providers to take the necessary actions needed.
Funding
The Improving Healthcare Quality through Health IT for Persons with Intellectual Disabilities Study at the University of Illinois at Chicago is funded by the Agency for Healthcare Research and Quality (AHRQ) (Grant # R21 HS18766-01).
