Braille Monitor                                             November 2015

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A Therapeutic Research Collaboration

by Anil Lewis

From the Editor: Anil Lewis is the executive director of the Jernigan Institute, and one of his goals is to partner with others involved in research. The collaboration with the Therapeutic Research Foundation is one of many partnerships in which the NFB Jernigan Institute will be involved. Here is what Anil has to say:

The National Federation of the Blind Jernigan Institute leads the quest to understand the real problems of blindness and to develop innovative education, technologies, products, and services that help the world's blind to achieve independence and live the lives they want. We capitalize on the collective life experiences of the blind in order to analyze, design, develop, and evaluate products, services, and systems that affect the lives of blind people. We seek to establish productive and mutually beneficial relationships with other researchers to leverage their expertise with our own.

In one of our most recent collaborations, the National Federation of the Blind (NFB) has engaged in a partnership with the Therapeutic Research Foundation (TRF) to seek innovative and technologically driven solutions to improve the healthcare and mobility of the blind and visually impaired.

TRF is a 501(c)3 nonprofit organization founded to facilitate the research and development of cost-effective and innovative pharmaceutics, biotech devices, medical aids, and treatment options. Because of our shared interest in developing mobility and healthcare solutions for the blind and visually impaired, we helped TRF develop and launch an online survey of members of the blind and visually impaired community. Boehringer Ingelheim Pharmaceuticals (BI), a research-driven group of companies dedicated to the discovery, development, manufacture, and marketing of innovative healthcare products generously made a ten thousand dollar donation to support this effort. We received feedback from 377 participants. The survey focused on mobility and healthcare needs, with an emphasis on adoption and usage of current technology such as internet and mobile phones. TRF will be publishing their findings in an upcoming white paper, and we will provide a link once it is available. The following is a sample of some of the survey findings:

Survey data related to access technology usage demonstrated that the most frequently used access software programs were JAWS, VoiceOver, Window-Eyes, and Kurzweil 1000. Even with knowledge of and use of access technology, 57 percent of those completing the survey expressed an inability to use important websites due to lack of accessibility. In addition, 52 percent expressed experiencing mobile phone apps not working as expected, which could be an expression of usability and/or accessibility issues.

Of those individuals surveyed, 88 percent expressed having difficulty reading the medication label, with 84 percent of them using a magnifier and 51 percent using additional visual aids.

Thirty-six percent of those surveyed indicated transportation is a significant barrier to receiving healthcare services. In addition, an inability to independently complete required paperwork and lack of empathy from professional medical staff was identified as major challenges they experienced when visiting a doctor’s office.

Along with the focus on medical concerns, the survey covered some basic issues of mobility, with these findings: long white cane, 93 percent; sighted guide, 78 percent; electronic device, 33 percent; and guide dog, 31 percent.

After a preliminary analysis of the online survey findings, we helped TRF coordinate three separate telephone conference focus groups to probe deeper into the responses and to better help understand the unmet needs of the blind and visually impaired community. The conference calls, consisting of fifteen NFB members, were held on March 30, 2015. As a result of the focus groups, several innovative ideas emerged including a desire for certain accessible medical devices. We plan to work with TRF to refine the best ideas using our membership and specifically our Diabetes Action Network as a resource. Moreover, we will seek to build prototypes that result in advances in healthcare tools and mobility aids for blind and visually impaired consumers in the marketplace.

The TRF bridges the gap between academia and industry, and with our continued collaboration the TRF hopes to forge an unprecedented effort to design, develop, and implement solutions to the unmet navigation and healthcare needs of the blind and visually impaired. For additional information about the Therapeutic Research Foundation and to donate to this cause, please go to <www.tr-f.org>.

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