Our Progress in Meeting Information Needs

Activities

Our first efforts have been focused on understanding the health information needs of SCI consumers. We met with our SCI Consumer Advisory Board, conducted a small pilot survey, and reviewed the literature on information needs and information-seeking behavior among SCI consumers. Based on those results, and in collaboration with the UW Center on Outcomes in Rehabilitation Research, we added a series of questions to a longitudinal survey of 300 SCI participants.

Major findings from our literature review:

Some studies collected data primarily on preferred sources of information [1,2,3]. Others asked about actual usage of particular sources of information [4,5]. None, however, have asked about both preferences and actual access patterns [4,1,6,7,8].
Individuals with spinal cord injuries report high use of the internet for their health information. .
The internet is the preferred source of information about clinical trials and research related to spinal cord injuries [1,6] and interacting with peers with spinal cord injuries [1].
A survey of computer and Internet use among people with SCI and traumatic brain injuries (TBI) asked participants to identify information they would like to find using the Web, but could not locate. The most frequent topics mentioned were current research findings, support group information, and information specific to particular conditions and circumstances [6].
Hart, et al. [9] conducted a large survey (N=590) about interest in 18 topics within 3 domains: medical, sexuality, and wellness. Over 50% of the respondents indicated “great interest” in exercise programs, testing of nerve and muscle function, and bladder or kidney problems. A “cure for SCI” was the most frequently added topic by participants.

Research gaps

Our review of the literature indicates:

Few studies differentiate between information people do actively seek and information that people perceive as important.
Studies do not clarify whether needs differ over time or for specific subgroups (as is true for individuals with MS and with cancer).
Some research suggests people may prefer different delivery methods for different types of information (e.g., one study suggests that for people with SCI, the Internet may be a preferred source for clinical trial information while other studies show a preference for face-to-face communication with certain topics).
We could find no research on user judgment of quality of health information for specific user groups.

Next steps

Analysis of the SCI Survey is currently underway. Questions asked in the survey include:

Current and preferred form of information (Web site, book, newsletter).
Current and preferred provider of information (doctor, friends, etc.).
Current information needs (topics).
Internet access and use of assistive technologies.

We are working with the Model Systems to identify organizations to collaborate in getting a similar survey out to individuals with TBI & Burn injuries.

References