The Rehabilitation Research and Training Center: Health and Wellness (www.ohsu.edu/oidd/rrtc/index.cfm ) at Oregon Institute on Disability and Development (OIDD) is launching several projects, and Amy Cline, MPH, Dissemination Coordinator withRRTC, is charged with disseminating them. The center promotes the health and wellness of people with disabilities through research, training, technical assistance and dissemination focused on three important areas: health care access, health promotion and the measurement of health.
“We are currently releasing some of the projects and tools we expect to make the biggest difference for people with disabilities,” said Ms. Cline. The tools are or will be used by researchers, clinicians, public health professionals, people with disabilities and disability advocates. All tools have been thoroughly tested and validated by people with disabilities.
How You Say It Matters
Ms. Cline and Robert Boy, at the University Center for Excellence in Developmental Disabilities, co-wrote “How You Say It Matters: A Guide to Creating Professional and Accessible Publications.” Built on the principles of universal design, the guide explains how to make publications accessible for people with all types of disabilities and includes topics like People First Language, using alternate formats and what “large print” really means. It is intended for anyone who communicates with the public, including researchers, clinicians, public health professionals, people with disabilities and disability advocates. Its publication is planned for early 2010, and should help eliminate much of the considerable confusion about exactly what makes publications accessible.
How You Say It Matters has been reviewed by disability experts. The authors have also developed a companion training presentation that is available upon request.
Measuring Health Status
Effective health promotions are built on accurate and sensitive measurements. Under the direction of principal investigator Willi Horner-Johnson, PhD, the center has developed a health-related quality of life measurement tool that reliably assesses health status regardless of a person’s functional ability. These scales have emerged from a five-year process of developing and testing a unique health survey that is not biased against people with disabilities. The tool is also being tested to determine whether it is sufficiently sensitive to detect change due to interventions. It should be available to researchers in 2010.
Measuring Clinic Usability
RRTC’s Outpatient Health Care Usability Profile ( OHCUP) enables clinics and medical facilities to measure their usability to patients with disabilities. This simple, easy-to-use, 156-item checklist addresses three areas: patient arrival, public facilities and exam rooms (which are not addressed by the ADA), and access to primary services. The survey enables users to evaluate exam rooms from the usability perspective of patients with disabilities — Is there at least one adjustable exam table? Is there a way to weigh people who use wheelchairs? Are there graphic charts or other ways for patients with cognitive disabilities to communicate how they feel, including whether they’re in pain? People with disabilities cite parking as one of the biggest barriers to accessing health care at outpatient clinics, according to Ms. Cline. The profile provides careful evaluations of usability in terms of mobility, sensory and cognitive abilities. The profile takes roughly two hours to complete and requires only a tape measure and a level.
Breast Cancer Screening
The “Right to Know Campaign” is a health communication program developed by the CDC to increase awareness of and promote breast cancer screening for women aged 40 and older with physical disabilities. Its goal is to improve access, promote health, and better communicate crucial information about breast cancer screening and awareness for women with physical disabilities in Oregon. RRTC, in conjunction with the University of Kentucky, has developed a modified OHCUP to assess the accessibility of mammogram facilities. This project is targeted for nationwide use. The profile for mammogram facilities is roughly 45 pages, filled with great graphics, and requires only an hour or two to complete.
Developing Better Health Promotion Programs
Guidelines for Health Promotion Programs (www.ohsu.edu/cdrc/rrtc/surveys.cfm) are based on a review of existing literature about health promotion interventions for people with disabilities. The 20 guidelines provide best practices for community-based health promotion programs for people with disabilities (that work equally well for all populations). The guidelines address issues such as involving people with disabilities in the planning process, holding programs in places close to public transportation and making sure all program materials are in an accessible format.
Promoting Access to Health Services
Under the direction of Jana Peterson, MPH, PhD, evaluation is nearly complete of Promoting Access to Health Services (PATHS), a curriculum to help women with mobility impairments better manage their health, such as knowing about their specific health risks, communicating effectively with their clinician and following up as necessary. Women between the ages of 35 and 64 who live in the Portland, Salem and Eugene areas and experience limitations with walking were eligible for the PATHS study. The program is currently in the final stages of data analysis, and the results will be posted within the next few months on the RRTC website and in future peer-reviewed journal articles.
A companion research project, Clinic-Level Intervention for Preventive Services (CLIPS) addresses improving health care for people with disabilities at the clinic level, including assessing the care clinicians provide to patients with disabilities. For many people with disabilities, finding available and knowledgeable clinicians is difficult. This study visited two rural health clinics and interviewed patients with disabilities and clinicians and clinic staff separately to evaluate the clinic’s health care services. An interesting preliminary finding is that only 20 percent of patients reporting any level of impairment were believed by the clinicians to have limitations that might impede preventive health care screenings. This study is in the final stages of data analysis and a report on the RRTC: Health & Wellness’ findings is expected early next year.