New study evaluates community response to personally controlled health information

Boston 01 May 2009A new paper published in the latest issue of the open access publication Journal of Medical Internet Research evaluates consumers' experiences with the Indivo personally controlled health record (PCHR) system - a system developed by researchers in the Children's Hospital Informatics Programme (CHIP) more than a decade ago that has been adapted by PCHR providers including Dossia, Microsoft and Google. This is the first report to be published that investigates consumers' response to a platform PCHR and subsequent implications for policy and design.


The two-year study was conducted by CHIP researchers at a university-based health centre, where Indivo was promoted to all members of the university community, including undergraduate and graduate students, faculty, staff, retirees and affiliates of the site and setting, regardless of a person's status as a patient of the health centre. More than 300 people, ranging in age from 18 to 83, participated in the study via focus groups, interviews, usability testing or a full demonstration of Indivo and shared their experiences, feedback and suggestions with the study team.

"This research comes at an important time", stated co-author Kenneth Mandl, MD, MPH, director of the Intelligent Health Laboratory within CHIP. "The Obama administration has made health information technology a priority and we have a unique window of opportunity now, before widespread adoption of PCHRs is realized, to do research - in this case, to see how people in a community access and interact with their health information independent of a clinician or administrator - and determine what changes need to be made and policies put in place, and get it right."

Observations obtained during the course of the study suggest that issues of health and technology literacy, accessibility, privacy, autonomy, quality and accuracy, age, and social support within households and families are all variables relevant to the adoption and use of PCHRs. Broadly, researchers detected:

  • A general feeling of disconnect between people and their health information
  • A dramatic overestimation of the extent to which health information data are digitized and flowing in support of patient care
  • A lack of awareness of the existence of PCHR technology
  • High levels of interest in PCHRs once participants had exposure to one
  • A perception that PCHR benefits outweigh their potential risks
  • Differing opinions/appreciations between older/younger participants around the risks and opportunities associated with sharing health information
  • A need for help understanding technical or clinical issues
  • Concerns about quality, accuracy and locus of responsibility for maintaining records
  • Uncertainty about appropriate and safe read/edit access policies
  • Consumer demands of the technology that exceeded technical sophistication of current PCHRs

The co-authors believe the resonation of the Indivo PCHR platform with study participants is an indication of the rapidity at which PCHRs will be adopted once the technology has progressed further. In the meantime they advocate for continued evaluations of PCHR use and broader discussions about technical and policy approaches, including the development of clear guidelines, lines of responsibilities and methods of educational and technical assistance.

"As we progress toward large-scale adoption of PCHRs, we need to proceed with a critical eye for how to advance the technology but also continuously assess the impact it is having on the existing landscape of health behaviours, knowledge, understanding and relationships", stated Elissa Weitzman, ScD, MSc, lead author of the paper and also of CHIP. "When you drop a new technology like this into an already complex system of behaviours, knowledge and assumptions, we can expect it to create a ripple effect that will resonate out from an individual to their care providers and beyond."

This research was supported by the Centers for Disease Control and Prevention and the National Institutes of Health/National Institute on Alcohol Abuse and Alcoholism. Authors of the paper titled "Acceptability of a Personally Controlled Health Record in a Community-Based Setting: Implications for Policy and Design" are Weitzman E., Kaci L., Mandl K. The study appeared in the Journal of Medical Internet Research 2009; 11(2):e14.

Indivo is the original personally controlled health record system. Created in 1998 by CHIP researchers, the Indivo model is built to public standards, is web-based and emphasizes patient control, portability, and security of health and wellness information. Indivo integrates health information across sites of care and over time, and is free and available under an open-source license.

The Children's Hospital Informatics Programme is a multi-disciplinary applied research and education programme at Children's Hospital Boston. CHIP investigators work at the intersection of information science, health care and biomedical discovery, advancing the state-of-the-art in functional genomics, personalized medicine, biomedical research collaboration and public health.

Children's Hospital Boston is home to the world's largest research enterprise based at a paediatric medical centre, where its discoveries have benefited both children and adults since 1869. More than 500 scientists, including eight members of the National Academy of Sciences, 11 members of the Institute of Medicine and 13 members of the Howard Hughes Medical Institute comprise Children's research community. Founded as a 20-bed hospital for children, Children's Hospital Boston today is a 396-bed comprehensive centre for paediatric and adolescent health care grounded in the values of excellence in patient care and sensitivity to the complex needs and diversity of children and families. Children's also is the primary paediatric teaching affiliate of Harvard Medical School.

Source: Children's Hospital Boston

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