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Managing Personal Health Information for Co-Morbid Chronic Conditions
Timothy Patrick Hogan, PhD MS BS
Edward Hines Jr. VA Hospital, Hines, IL
Funding Period: October 2010 - September 2011
Health services research often is characterized by studies that focus on disease processes and health conditions in isolation; however, at present, many Veterans are living with and taking steps to manage multiple chronic health conditions simultaneously. Compared to the onset of a single disease, the experience of co-morbid chronic conditions can present pressing challenges to self-management, including the need to manage diverse kinds of health information. The expression "personal health information management" refers to the range of activities that support individuals' access, integration, organization, and use of information pertaining to their own health situation. Although there is a growing evidence-base regarding the management of personal health information, the challenges confronted by individuals who must manage personal health information for multiple, co-existing conditions has been largely ignored.
The objectives of this pilot study were to 1) describe the management of personal health information among Veterans with co-morbid chronic health conditions; 2) examine the relationships between the management of personal health information and chronic disease self-management in the context of co-morbid conditions; and 3) explore the role that "Veteran-centric informatics" applications play in the management of personal health information and in the self-management activities of Veterans with co-morbid chronic conditions.
The appropriateness of qualitative methods for examining topics related to the experience of chronic illness and the management of personal health information has long been recognized. In an effort to assemble an in-depth picture of the resources, strategies, and challenges associated with personal health information management among Veterans with co-morbid chronic conditions and their relationship to self-management, we conducted one-on-one, audio-recorded, semi-structured interviews and administered a series of background questionnaires to a sample of Veterans recruited through a single VA facility. To be eligible to participate, Veterans had to be at least 18 years of age and have no active serious mental health co-morbidities, and no terminal diagnoses documented in their medical record. To further facilitate comparative analysis, all participants were also required to have an active diagnosis for diabetes and at least two other active diagnoses for co-morbid chronic conditions. Through chart reviews and close collaboration with clinical staff, we identified and subsequently mailed study invitation letters to 143 eligible Veterans. 26 Veterans participated. The resulting questionnaire data is being analyzed using basic descriptive statistics. Audio-recordings of the interviews have been converted into verbatim transcripts; analysis is ongoing and is following the constant comparative method, the essence of which involves deriving basic concepts from data and comparing them with other data to facilitate meaningful categorization.
Participants were male, averaging 68 years in age, with at least some college education. Beyond diabetes which served as the anchor condition for the sample, the two most common co-occurring conditions were hypertension (84%) and chronic pain (46%). Participants were asked to rank order their conditions and to identify the three conditions that they perceived to be the most important to them. Veterans based their rankings on a variety of factors, including the amount of time, energy, and resources that they expended on each condition as well as the extent of negative emotions (e.g., worry, anxiety) associated with them. On average, diabetes ranked 1.83 in terms of priority, and the other two most common conditions, hypertension and chronic pain, had priority rankings of 3.25 and 3.90, respectively. Veterans reported turning to a variety of sources for information about their conditions, with healthcare providers (92%) being the most commonly reported source followed by the Internet (27%) and other media outlets (19%). When asked about the source that they would turn to first for information about their conditions, health care providers were most frequently mentioned (69%), followed by the Internet (19%), and then family members and friends (12%). The information that participants reported gathering from these sources existed in a variety of forms, including spoken words, printed material, and digital content. When interviewing participants about their experiences managing this information, most described using some manner of paper-based system (e.g., structured files, piles with less formal structure but still meaningfully accessible) in their home for at least some information; others reported reliance on memory or use of an electronic filing system (e.g., storing files on a desktop PC, bookmarks in Web browsers) for digital content. Beyond the gathering and subsequent management of information from other sources, many participants described ways in which they generate or create health information of their own, often as part of broader efforts to monitor self-management activities. Specifically, the creation of printed or electronic spreadsheets to track glucose levels, blood pressure, dietary patterns, and exercise regimens was common. Other instances of information creation included the use of tools like blood glucose monitors to store biometric data and subsequently upload it to a computer, "health buddy" blood pressure cuffs which transmit readings via telephone lines to VA databases, and other Web-based diaries and logging tools. Personally created information often served as the basis for another commonly reported personal health information management activity - the sharing of health information with select others, particularly informal caregivers and healthcare providers during upcoming in-person appointments. When asked to describe their experiences managing the information that they had about their various conditions, most Veterans did not articulate pressing roadblocks or challenges; however, some did express feelings of being overwhelmed by the amount of personal health information available and relevant to their conditions, and a desire for other information not readily available to them, including aspects of their medical records.
Recently, the VA identified "veteran-centric informatics" and the care of complex, chronic health conditions as priority research areas. This pilot study represents a critical first step in an emerging research program that will enhance the capacity of veteran-centric informatics applications to support self-management and ultimately improve health outcomes among veterans with co-morbid chronic diseases. The findings will also inform future efforts to develop theoretically-based interventions intended to support personal health information management in the context of co-morbid chronic conditions.
External Links for this Project
NIH ReporterGrant Number: I01HX000398-01
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DRA: Health Systems, Cardiovascular Disease, Diabetes and Other Endocrine Disorders
DRE: Diagnosis, Technology Development and Assessment
MeSH Terms: none