MyHealthPortal: Using an Electronic Portal to Empower Patients with Breast Cancer (Pennsylvania)

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Summary:

Patient use of online personal health records (PHRs) holds the potential to make incremental improvements in patients' access to their health information. Breast cancer is the most common cancer in the U.S., and a diagnosis often evokes fear and distress. Breast cancer patients report unmet needs for information and skills to manage their illness and cope with the resultant major life changes and complex emotions. To bridge the divide between patients and the healthcare system, this study developed and evaluated a patient portal, called "MyHealthPortal," that integrates PHRs with educational and support content about treatment decision making and care management for newly diagnosed patients.

The specific aims of the project were as follows:

  • Develop a patient-centered web-based portal for breast cancer patients undergoing treatment in a comprehensive cancer center. 
  • To assess the feasibility and potential impact of MyHealthPortal with early-stage breast cancer patients using a pilot randomized controlled trial (RCT). 

Researchers developed MyHealthPortal through an iterative process including a literature review, web portal survey, health literacy evaluation, and usability testing. Qualitative studies explored patients' information needs and preference for a PHR-integrated portal. They also assessed clinicians' attitudes and expectations regarding the possible impact on the doctor-patient relationship from the implementation of a patient portal. Finally, the research team evaluated the appropriateness of the PHR presentation, educational content, and quality of the interactive tools before testing the final system in a RCT.

Results indicated that using a patient portal is feasible and useful among breast cancer patients. When measuring the effect of the system on patient outcomes, they found no difference between the groups for cancer-related distress, physical quality of life, and doctor-patient communication. However, information competence and self-efficacy scores in the intervention group were higher than those in the control group. Medical terminology was sometimes difficult for patients to understand, and the researchers concluded that interactive and comprehensive PHR systems need to provide educational or translational information for patients and families, ideally tailored to their individual circumstances and conditions. Per the researchers, future research should focus on continued patient and provider engagement in portal development, usage, ongoing patient support and self-management, and doctor-patient communication. Future work should also examine the potential of interactive PHR portals that expand from cancer prevention into survivorship, as well as mobile device PHR accessibility.

MyHealthPortal: Using an Electronic Portal to Empower Patients with Breast Cancer - 2012

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS09-087: Mentored Research Scientist Research Career Development Award (K01)
  • Grant Number: 
    K01 HS 019001
  • Project Period: 
    August 2011 - July 2016
  • AHRQ Funding Amount: 
    $747,959
  • PDF Version: 
    (PDF, 304.87 KB)

Summary: Patient use of online electronic medical records has the potential to improve health outcomes. Educational materials that are made available within a patient-accessible electronic medical record (PAMR) help patients understand their clinical data and support them through use of integrated behavioral and health communication strategies in a comprehensive format that contributes to optimum care.

Studies show that breast cancer patients report that providers often fail to understand their psychosocial and communication needs. In addition, they report the need for information and skills to manage their illness and the major life changes and emotional problems that usually accompany it. One objective of this research is to integrate personal information from an electronic medical record with educational and support content about breast cancer treatment decisionmaking and care management into the MyHealthPortal patient portal. A second project objective of this Mentored Research Scientist Research Career Development Award is to enhance Dr. Wen’s career development through education and training activities.

Using an iterative developmental process, this work will be accomplished through a four-phase research plan to ensure a user-centered design and the acceptance of the portal by the target audience and health care providers. Phase 1 includes survey research to assess existing institutional portal users’ satisfaction with the current portal, and to identify features in need of improvement. Phase 2 consists of a qualitative study to identify breast cancer patients’ information needs and preference for a PAMR-integrated portal. Phase 3 includes a qualitative study to explore breast cancer clinicians’ attitudes and expectations regarding the implementation of a patient portal that integrates shared medical records and e-communication capability that will affect doctor-patient relationships. Phase 4 includes both cognitive user and usability testing for system refinement to maximize MyHealthPortal’s usefulness and patient satisfaction. Once fully developed, the study will evaluate the feasibility of the portal system in a pilot randomized controlled trial study with 120 breast cancer patients to examine MyHealthPortal’s effects on patient outcomes including cancer- related distress, information competence, coping self-efficacy, physical quality of life, and doctor-patient communication. Intervention participants’ satisfaction with and usage of the MyHealthPortal system will also be evaluated.

Dr. Wen identified a mentorship team to provide expertise in major areas of relevance to the research activities. Enrollment in three core courses will advance his career and research goals. He will attend a series of seminars and workshops and will attend and present at annual meetings and conferences on a variety of research topics directly related to the training needs identified by the mentorship team.

Specific Aims:

  • Develop a patient-centered Web-based portal (MyHealthPortal) for breast cancer patients undergoing treatment in a Comprehensive Cancer Center. (Ongoing)
  • Conduct a pilot randomized controlled trial study to assess the feasibility and potential impact of the MyHealthPortal system with early-stage breast cancer patients. (Ongoing)

2012 Activities: The project team worked on the development of text, narrative, front-page interface, and user refinement of the front-page interface. The team reviewed other patient portals and a study by the Robert Wood Johnson Foundation that developed a personal health record application that presents data to patients with chronic disease.

Assessment of the Web portal survey to understand patient preference was underway during this period, with approximately 70 people recruited. In order to increase recruitment goals, the strategy was changed from online recruitment and survey completion to identifying people in the lobby and cafeteria to have them manually fill out the survey. This revision was approved by the institutional review board. Thirty- two patient and 19 provider interviews were completed. Preliminary results were presented at the 2013 Society of Behavioral Medicine Annual Meeting in March.

Preliminary Impact and Findings: This project has no findings to date.

Target Population: Cancer: Breast Cancer, Women*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions and the electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

* This target population is one of AHRQ’s priority populations.

MyHealthPortal: Using an Electronic Portal to Empower Patients with Breast Cancer - 2011

Summary Highlights

  • Principal Investigator: 
  • Funding Mechanism: 
    PAR: HS09-087: Mentored Research Scientist Research Career Development Award (K01)
  • Grant Number: 
    K01 HS 019001
  • Project Period: 
    August 2011 - July 2016
  • AHRQ Funding Amount: 
    $747,959
  • PDF Version: 
    (PDF, 196.26 KB)

Summary: Patient use of online electronic medical records has the potential to improve health outcomes. Educational materials that are made available within a patient-accessible electronic medical record (PAMR) will not only help patients understand their clinical data, but will also support them through use of integrated behavioral and health communication strategies in a comprehensive format that contributes to optimum care. Breast cancer, the most common cancer and the second-leading cause of cancer deaths among women, accounts for 29 percent of all new cancer diagnoses in the United States. A diagnosis of breast cancer often evokes fear and distress. Studies show that breast cancer patients report that their providers often fail to understand their psychosocial and communication needs in addition to their need for information and skills to manage their illness and deal with the major life changes and potential emotional problems that usually accompany it. To bridge the divide between patients and the health care system, one objective of this research is to integrate personal information from an electronic medical record with educational and support content about breast cancer treatment decisionmaking and care management into the MyHealthPortal patient portal. A second project objective of this Mentored Research Scientist Research Career Development Award is to enhance the principal investigator's career development through education and training activities.

Using an iterative developmental process, this work will be accomplished through four phases of the research plan to ensure a user-centered design, and the acceptance of the portal among both the targeted audience and health care providers. Phase 1 includes survey research to assess existing institutional portal users' satisfaction with the current portal and to identify features in need of improvement. Phase 2 consists of a qualitative study to identify breast cancer patients' information needs and preference for a PAMR-integrated portal. Phase 3 includes a qualitative study to explore breast cancer clinicians' attitudes and expectations regarding the implementation of a patient portal that integrates shared medical records and e-communication capability that will impact doctor-patient relationship. Phase 4 includes both cognitive user and usability testing for system refinement to maximize MyHealthPortal's usefulness and patient satisfaction. Once fully developed, the study will evaluate the feasibility of the portal system in a pilot randomized controlled trial study with 120 breast cancer patients to examine the impact of the MyHealthPortal system on patient outcomes including: cancer-related distress, information competence, coping self-efficacy, physical quality of life, and doctor-patient communication. Intervention participants' satisfaction with and usage of the MyHealthPortal system will also be evaluated.

The findings of this research and the developmental process that it will employ will be applicable to the breast cancer population, but could also serve as a model for PAMR-integrated system development and implementation among other cancer populations. The research will also provide preliminary data to support a R01 proposal that will examine the efficacy and cost-effectiveness of the MyHealthPortal system in a larger study.

Dr. Wen identified a mentorship team suited to provide expertise in major areas of relevance to the research activities. Enrollment in three core courses will advance the investigator's career and research goals. Dr. Wen will attend a series of seminars and workshops as well as present and attend at annual meetings and conferences across a variety of research topics directly related to the training needs identified by the mentorship team.

Specific Aims:

  • Develop a patient-centered Web-based portal (MyHealthPortal) for breast cancer patients undergoing treatment in a Comprehensive Cancer Center. (Ongoing)
  • Conduct a pilot randomized controlled trial study to assess the feasibility and potential impact of the MyHealthPortal system with early-stage breast cancer patients. (Ongoing)

2011 Activities: The project began in August 2011 and focused primarily on project start-up activities including the preparation of materials for institutional review board approval. Recruitment of study subjects was initiated and Dr. Wen began the subject interview process. Completed interviews were transcribed and reviewed. The medical component of the portal was finished and additional content is in progress.

Preliminary Impact and Findings: This project has no findings to date.

Target Population: Cancer: Breast Cancer, Women*

Strategic Goal: Develop and disseminate health IT evidence and evidence-based tools to support patient-centered care, the coordination of care across transitions and the electronic exchange of health information to improve quality of care.

Business Goal: Implementation and Use

* This target population is one of AHRQ's priority populations.

MyHealthPortal: Using an Electronic Portal to Empower Patients with Breast Cancer - Final Report

Citation:
Wen KY. MyHealthPortal: Using an Electronic Portal to Empower Patients with Breast Cancer - Final Report. (Prepared by the Fox Care Cancer Center under Grant No. K01 HS019001). Rockville, MD: Agency for Healthcare Research and Quality, 2017. (PDF, 568.55 KB)

The findings and conclusions in this document are those of the author(s), who are responsible for its content, and do not necessarily represent the views of AHRQ. No statement in this report should be construed as an official position of AHRQ or of the U.S. Department of Health and Human Services. 
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