Online Database Lists Self-Care Technology Resources for Patients With Heart Failure or Dementia
Researchers at the University of Rochester Center for Future Health conducted an environmental scan of self-care technologies for people with heart failure or early-stage dementia. Project staff used the results of the environmental scan to construct a searchable online database of self-care technologies for the two conditions.
- The environmental scan identified 254 existing self-care technologies for heart failure and early dementia as well as self-care technologies that are still needed. The scan organized self-care technologies into five categories (primary user, functions, purpose for the user, consumer interest and technology status) with multiple dimensions for each category.
- Researchers constructed the Self-Care Technology Information Center as an online searchable database of self-care technologies related to heart failure and dementia, designed for medical providers, medical and technology researchers, product developers, philanthropic organizations and government funding agencies.
The Robert Wood Johnson Foundation (RWJF) supported this solicited project with a grant of $139,799 between August 2005 and June 2006.
An aging population is placing an ever-increasing burden on health care systems, according to researchers at the Center for Future Health at the University of Rochester, a multidisciplinary research laboratory dedicated to the use of personal health technology to give patients, caregivers and physicians better health status information.
Approximately 875,000 hospitalizations each year are related to congestive heart failure alone, with a combined direct and indirect cost of approximately $28 billion annually, as cited in a 2005 report issued by the Center for Aging Services Technologies, a coalition of technology companies, aging services organizations and others dedicated to improving the aging experience through technology.
Giving patients and their caregivers easy access to self-care technologies that make them less dependent on the health care system could reduce health care costs dramatically. Self-care technologies—tools used by consumers and their nonprofessional caregivers to manage health issues either outside of formal medical settings or in collaboration with their health care providers—promise to:
- Improve quality of life for people with chronic health conditions and their caregivers.
- Promote healthy communities by providing continuous personal health monitoring and individualized feedback.
- Assure awareness of and access to continuous health data collected in nonclinical settings.
There are technologies that can make people less dependent on the professional care system; the challenge is to help people who need these technologies learn about and access them, since the body of knowledge in this field is diverse and widely scattered, according to Center for Future Health researchers.
This grant was a part of RWJF's effort to catalyze a health information environment to support individuals and families. For example, Health e-Technologies: Building the Science of e-Health, the RWJF national program started in 2001, was designed to support and translate results of scientific research on the effects of interactive technologies on chronic disease management and health behavior change.
RWJF asked researchers at the University of Rochester Center for Future Health to conduct an environmental scan of self-care technologies for people living with chronic illness. An environmental scan is an understanding of the current environment in a particular field or subject area that identifies trends, gaps and issues as a basis for future planning.
The goals of the project were to:
- Identify existing and needed self-care technologies for selected medical conditions associated with aging.
- Make information about self-care technologies for these conditions accessible in an easy-to-use, searchable database for researchers, providers and others.
The Center for Future Health focused its environmental scan on self-care technologies for heart failure and the early stages of dementia. These two conditions:
- Affect substantial proportions of the aging population.
- Display readily measured symptoms, such as changes in activity level and gait.
- Usually require extended periods of time to develop—years in most cases. Monitoring that enables early detection and treatment may be very valuable.
To identify, evaluate and categorize self-care technology for the environmental scan, researchers consulted 272 sources. These included 10 medical providers, 16 researchers, 31 universities, 11 major corporations, 140 small and mid-sized companies, 14 associations, 10 public and private funding sources, six federal government agencies and others.
Researchers constructed the database from the information gathered through the environmental scan. They called upon individuals from the information source groups to provide advice and feedback on database development. Activities included:
- Telephone and in-person interviews (August 2005) with potential database users (three each from the medical provider, technology researcher and product developer categories) to learn the needs of the intended audience.
- Creation of a template for the database and a Web-based survey (September 2005) of 25 potential database users to collect feedback on the template.
- Workshops (October and November 2005) with eight potential users to learn how to make the database user-friendly.
- A workshop (January 2006) with 10 potential database users to identify gaps between what users needed and what the database provided.
- A five-question survey (January and February 2006) of 12 external evaluators, asking for feedback on database ease of use.
- A pilot test (February 2006) of the database by 15 users representing the target audiences.
Under a subcontract, ITX, an information technology consulting firm based in Rochester, N.Y., formatted the database for ease of use.
Under a separate RWJF grant (ID# 052618), researchers at the Center for Future Health conducted a workshop for patients and caregivers in December 2005 that considered technologies that help the elderly live independently. The workshop focused on self-care technologies assisting the same chronic conditions: heart failure and early dementia.
Because the patient workshop was held four months after the environmental scan and database project began, project staff did not include patient needs' categories in the database. Project staff did, however, include the patient workshop methodology and some of its findings in the environmental scan report.
Project staff reported the following results to RWJF in a report entitled Environmental Scan - Final Report: Technology for Self-Care and Self-Monitoring. (See the Bibliography for details.)
- The environmental scan identified 254 existing self-care technologies for heart failure and early dementia as well as self-care technologies that are still needed. The scan categorized self-care technologies by:
- Primary User: consumer or non-professional caregiver, consumer and medical provider, medical provider only.
- Functions: gathers data, transmits data, analyzes trends, reports and informs, makes decisions and takes action.
- Purpose for the User: educates, tracks the condition, manages the condition, personal safety, social connectedness.
- Consumer Interest: early diagnosis of change, intervention enablement (i.e., signaling when to intervene), communication quality. (This category resulted from the patient workshop funded by grant ID# 052618. See Communications above.)
- Technology Status: commercial, in development, research.
- Key findings of the environmental scan include:
- No commercially available self-care technology supports early diagnosis of change in people with early dementia. Such technology would collect data about a patient's status (physiological, emotional, etc.), compare these data with normal ranges or the patient's own trends over time and issue an alert to the patient and/or caregiver when a significant change occurs. By comparison, 15 percent of tools available to people with heart failure support early diagnosis of change.
- Most (85 percent) of the self-care technology available to people with heart failure is designed for use by the consumer in partnership with the medical provider. Some 64 percent of tools report data to patients and providers about patient health status in comparison to normal ranges, and not their personal ranges, and enable patients to live more independently through routine monitoring of their conditions. These technologies are not purely consumer-based because they lack the capacity to analyze trends and to recommend consumer decisions and actions.
- Commercially available technology for early dementia focuses mostly on safety issues (such as wander management), and supports caregivers, rather than consumers.
- Very little technology supports social networks for people with early dementia. Even less technology exists to support the social connectedness of people with heart failure.
- The Self-Care Technology Information Center is an online searchable database of self-care technologies related to heart failure and dementia. The database allows:
- Medical providers to help their patients find tools to enable them to manage their conditions outside of the clinical setting and live independently.
- Medical and technology researchers to identify existing products that could help refine and improve their own investigations.
- Product developers to better understand technology, now in the research stages, which could be incorporated into future self-care products.
- Philanthropic organizations and government funding agencies to understand which self-care technologies already exist and which might be developed.
Researchers offered the following conclusions in their report to RWJF:
- "The environmental scan project has laid groundwork for a lexicon [i.e., a dictionary] to describe self-care technology . The process [has] helped define what self-care should do."
- "Clearly, there is a need for Self-Care Technology to enable the chronically ill to be less dependent on the professional care system; and simultaneously, there is a demand for an innovative new profession which brings credibility to this multidisciplinary, patient-centric, approach to researching and developing technology to empower the individual and reduce the burden on the acute care system."
- Obtain information from all potential end users, including patients, before constructing a database. "For identifying the gaps, it made a big difference. Fortunately RWJF asked us to conduct a workshop with patients [under grant ID# 052618]. Because we chose the identical health conditions for both projects, we were able to use what we learned from the patients to analyze the database. If we could have done it differently, we would have done the workshop first with the patients, then developed the database." (Project Director)
AFTER THE GRANT
As of January 2007, as part of routine activity, project staff moved information on specific self-care products to the Clearinghouse at the Center for Aging Services Technologies. Patients and caregivers can access this information through a simple keyword search. This provides consumers a source for the information since the database developed as part of this project was not designed for consumers. In addition, it ensures that information is available if staff are unable to maintain the main database.
GRANT DETAILS & CONTACT INFORMATION
An Environmental Scan of Self-Care Technologies for Cardiovascular Disease and Dementia in the Elderly
University of Rochester Center for Future Health (Rochester, NY)
Dates: August 2005 to June 2006
(Current as of date of this report; as provided by grantee organization; not verified by RWJF; items not available from RWJF.)
Horwitz C and Bocko M. Environmental Scan—Final Report. Technology for Self-Care and Self-Monitoring for the Robert Wood Johnson Foundation. Rochester, NY: University of Rochester Center for Future Health, 2006.
World Wide Web Sites
www.selfcaretech.org (no longer available). "Self-Care Technology Information Center" provides background to the database, the ability to search the database of self-care technologies for heart failure and dementia, a downloadable copy of the Environmental Scan Final Report and other information and related links. Rochester, NY: University of Rochester Center for Future Health, June 30, 2006.
Report prepared by: Eve Shapiro
Reviewed by: Mary B. Geisz
Reviewed by: Marian Bass
Program Officer: Albert O. Shar