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Addressing HIV treatment disparities using a self-management program and interactive personal health record
Investigator (PI): Fiscella, Kevin
Performing Organization (PO): (Current): University of Rochester Medical Center, Department of Family Medicine / (585) 279-4800
Supporting Agency (SA): Patient-Centered Outcomes Research Institute (PCORI)
Initial Year: 2014
Final Year: 2018
Record Source/Award ID: PCORI/AD-1306-03104
Funding: Total Award Amount: $2,064,412
Award Type: Contract
Award Information: PCORI: More information and project results (when completed)
Number of Subjects: 200
Abstract: Background: Improving patient empowerment represents an important way to reduce inequities in patient adherence and outcomes. This is particularly so for patients living with chronic conditions such as HIV infection that require active patient involvement. Our team, which includes HIV patients, doctors, and HIV organizations, developed a training program to use a personal health record (PHR) for people living with HIV. Together with peer trainers, we will teach patients how to use their iPod and an interactive PHR, and how to ask their doctors questions that are meaningful to them. We will evaluate the effect of the training program by comparing patients who receive the program to those who don't. Objectives: The purpose of the program is to empower patients, improve patients' health care and health, and reduce disparities. Our project has four major aims: 1) improve patient empowerment; 2) increase patients' receipt of evidence-based care; 3) improve patients' health; and 4) reduce disparities in empowerment. We will assess patient empowerment based on the Patient Activation Measure and based on patient decision making, perceived involvement in care, and ability to seek out health information on the web. We will assess quality of care (control of HIV and receipt of evidence-based cancer screening and immunizations). We will assess change in health using widely used measures of physical and mental health. We will determine whether the intervention affects disparities in empowerment. Methods: We will assess the effect of a multimodal intervention on the empowerment of HIV patients by randomly assigning patients to the program or not. The program includes four components: 1) a customized personal health record (PHR) for HIV patients; 2) six 90-minute group-based training sessions in use of the iPod and the PHR; 3) a pre-visit coaching session; and 4) clinician training in support of patient empowerment. We will compare changes in key measures between patients who receive the program with those who don't. Project patient outcomes: We expect that patients who receive the intervention will show greater improvements in empowerment and reduction in disparities by race, ethnicity, and educational level for these facets of empowerment. Specifically, the intervention will increase activation, eHealth abilities, decision making, involvement in care, medication adherence, care quality, and health. Disparities in these measures will be smaller than those in the usual care group.
MeSH Terms:
  • Computers, Handheld
  • Decision Making
  • Evidence-Based Medicine
  • Health Communication
  • * Health Records, Personal
  • Health Services Accessibility
  • * Healthcare Disparities
  • HIV Infections /*therapy
  • Humans
  • Medication Adherence
  • Outcome Assessment, Health Care
  • Power, Psychological
  • Quality of Health Care
  • * Self Care
Country: United States
State: New York
Zip Code: 14620
UI: 20143398
CTgovId: NCT02087956
Project Status: Completed
Record History: ('2018: Project extended to 2018.',)