Results Summary

What was the research about?

Patients who feel confident that they can manage and improve their health often have better health outcomes than patients who are not as confident. Patients with complex health problems such as HIV can benefit from learning skills to manage their health. These skills include carefully monitoring symptoms, taking medicine as prescribed, and tracking side effects.

In this study, the research team created a program for patients with HIV to improve skills for managing their health. The program included an iPod app, group-based training, a meeting with a health coach, and training for doctors.

What were the results?

Compared with those who weren’t in the program, patients in the program

  • Felt more able to manage their health
  • Could find health information online and understand how to apply the information to their own care

The program did not affect whether patients took their medicine as prescribed or whether they felt involved in their care. It didn’t affect patients’ health and well-being or the preventive care the patients received. It also didn’t affect the amount of virus in patients’ blood.

Who was in the study?

The study included 360 adult patients with HIV living in New York and New Jersey. Patients were from diverse backgrounds. The average patient age was about 51. About half of the patients had never used an iPod.

What did the research team do?

The research team recruited patients from eight clinics in New York and New Jersey. The team assigned the patients to one of two groups by chance. One group was in the program; the other was not. Patients in the program received an iPod with a health-record app designed for people with HIV. The team trained patients to use the iPod and to put health data into the app, and the team encouraged patients to take the iPod to their next doctor visit. Health coaches helped patients in the program prepare for their next visit with their doctor. Patients receiving usual care visited their doctors as they normally would.

The team trained doctors treating patients in both groups to help patients feel more confident about managing their health care.

Patients with HIV, HIV doctors, staff from two HIV service organizations, and other healthcare providers gave input about how to do the study.

What were the limits of the study?

Many patients in the study had no detectable level of HIV, which made it hard for the research team to see a change in HIV level. Patients in the program met with a health coach only once, and the research team measured results after patients in the program had seen their doctor just once. The program may not have been enough for patients to make a change in health or health care. The study took place only in two states; the results may not apply to patients in other places.

Future research could have patients meet with a health coach more than once and measure results after more than one doctor’s visit.

How can people use the results?

Health centers and doctors could use this program to help HIV patients feel more able to manage their health and find health information online and apply it to their own care.

Final Research Report

View this project's final research report.

More About This Research

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.

In response to peer review, Fiscella made changes including

  • Including additional details on the follow-up times for the study group, how survey data were collected, and previous research using one of the main outcome measures in a similar population
  • Providing a table of baseline levels for the outcome measures
  • Adding an analysis of the outcomes just for the 109 participants who used the intervention app to see if treatment effects were larger in this group compared to the complete participant sample
  • Adding a figure to the report showing how literacy changes produced by the intervention differed between participants from minority groups and non-minority groups
  • Expanding the discussion of the association between improved outcomes on the activation measure and improved HIV medication adherence

Conflict of Interest Disclosures

View the COI disclosure form.

Peer-Review Summary

Peer review of PCORI-funded research helps make sure the report presents complete, balanced, and useful information about the research. It also confirms that the research has followed PCORI’s Methodology Standards. During peer review, experts who were not members of the research team read a draft report of the research. These experts may include a scientist focused on the research topic, a specialist in research methods, a patient or caregiver, and a healthcare professional. Reviewers do not have conflicts of interest with the study.

The peer reviewers point out where the draft report may need revision. For example, they may suggest ways to improve how the research team analyzed its results or reported its conclusions. Learn more about PCORI’s peer-review process here.

In response to peer review, Fiscella made changes including

  • Including additional details on the follow-up times for the study group, how survey data were collected, and previous research using one of the main outcome measures in a similar population
  • Providing a table of baseline levels for the outcome measures
  • Adding an analysis of the outcomes just for the 109 participants who used the intervention app to see if treatment effects were larger in this group compared to the complete participant sample
  • Adding a figure to the report showing how literacy changes produced by the intervention differed between participants from minority groups and non-minority groups
  • Expanding the discussion of the association between improved outcomes on the activation measure and improved HIV medication adherence

Conflict of Interest Disclosures

Project Information

Kevin A. Fiscella, MD, MPH
University of Rochester
$2,064,412
10.25302/12.2018.AD.130603104
Addressing HIV Treatment Disparities Using a Self-Management Program and Interactive Personal Health Record

Key Dates

December 2013
January 2018
2013
2018

Study Registration Information

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Last updated: January 12, 2022