Friday, May 1, 2015

What Goes Around and Comes Around?: Public Health Graduate Students on a Mission

I’ve heard it said that what goes around comes around.  When I was invited to speak at The University of Michigan School of Public Health in 1996 about the need for patient education materials in multimedia formats, I had no idea what would come of it.  I had to let go and hope that some seeds would take root and bloom.  Imagine my surprise and delight when a group of School of Public Health graduate students started going around and coming around to the Washtenaw County Library for the Blind and Physically Handicapped, the W.K. Kellogg Low Vision Support Group, and the local monthly meeting of the Michigan Federation of the Blind during their 2014-2015 academic year.  These students are working under the direction of the Center for Managing Chronic Disease at The University of Michigan, a program being disseminated by 5 partners across the country.

These students, in the spirit of Pope Francis, didn’t just want to be good shepherds; they wanted to live with “the sheep.”  They were taking their research out of the classroom and the library and into the real world where people with blindness and low vision live.  They observed adaptive hardware and software in use.  They asked questions such as, “How would you like to receive patient education materials?  Large print? Audio? Online?”  After preparing their patient education assignment about asthma, they gave their document to interviewees and asked them to participate in a focus group at the School of Public Health where participants were able to critique the project.

The students learned that one size does not fit all.  Even people living with the same eye diseases had different preferences when it came to colors and fonts.  They learned that their project did not convert to Braille well due to a lack of compatibility between the software that was used to create their work and the software that scanned print material into a Braille printer.  They learned that graphics, tables, graphs, and charts do not scan well and are sometimes deleted by technology that converts text to speech.  The most candid and interesting information shared by a participant who is totally blind indicated that some patients toss patient education materials into the nearest waste basket if they are handed anything in print.  I told the students what I would tell any writer, “Keep it simple” and demonstrated how my iPhone could read a page of their project aloud by using the KNFB app.  This new tool is an excellent, inexpensive resource for anyone who has questions about the materials that are being prepared for sight impaired readers.

When I stood before Professor Nancy K. Janz’ class in 1996, I had the passion of the character of John Adams in the Broadway musical, 1776, who sang, “Is anybody there?  Does anybody care?  Does anybody see what I see?”  The first people to care were the librarians who made medical information available online and in audio books.  Pharmacists followed and made labels on medications in large print and medication insert information about potential side effects available online.  Now some medical centers are providing patient education materials, research findings, and doctor biographies and rankings available online in print and video formats.

It is becoming even clearer that I was not the only person who cared.  The passion to create patient education information in accessible formats was and still remains a priority in higher education.  Other disciplines such as engineering have also been showing up at low vision support groups as students look for new ideas like the ones that gave us talking street lights and elevators that have improved the quality of life for many.  If more businesses and professionals were interested in the needs of people living with blindness and low vision, apartment complexes would not be replacing washers and dryers that were coin operated with cards that indicate the amount of money on them in tiny print.  Television commercials would not say, “Just call the number on the screen.”  Television and movie ads would not show words on a screen and expect everyone in their audiences to receive the message that they are sending.  Students from communications, journalism, broadcast, and theatre departments would also benefit from spending time going around to converse with viewers who are living with blindness and low vision.  When they do, they will learn why some people prefer listening to sporting events on the radio rather than watching them on TV and how lighting and color choices can detract from a performance rather than enhance it.

If you are living with low vision or know someone who is and would like more information about current research studies and results, you could contact Methods and Materials Professor Minal Patel at The University of Michigan School Of Public Health.