How I see it … #alttextforall campeign

Recently I have been involved with a new campaign created by Blind and Low Vision NZ. I am passionate about this cause as it something that I can relate to and have the opportunity to change in my role as a nurse, academic, geek and health informatics expert.

The alttextforall campaign is about making software and Internet services accessable for people who are blind or have low vision. During my PhD I worked with photographs and using the data in these and learned that photographs are not just pictorial representation but include hidden data that can be used in other ways. One of these ways is through alt text which is like a caption within a photograph.

www.alttextforall.com will be live until the end of October and is an online campaign that challenges Internet users, primarily businesses and social media uses to include alternitive texgt (alt text) in the photographs that they post so that people who use screen results came over what photographs include. The campeign website shows the background of #alttextforall, how to implement alt text in your photos online and outlines some of the services Blind and Low Vision NZ offers (the part which I was involved with).

There are number of videos but in the campaign, some of which show the impact of not having alt text for photographs others show her how easy it is to add it.

The main promotional video can be seen here:

How I see it – PhD submission is looming

With my PhD submission getting closer this post discusses my experiences of getting the best out of the technology that I use and along with this finding the perfect sunglasses. You might think that PhD, sunglasses and technology don’t go together – I beg to differ.

With between 1 and 2 months until my proposed submission date writing is in full swing. I am finding myself spending 12 to 16 hours a day in front of my computer. This amount of screen time is challenging. While a good proportion of my ordinary working day is spent in front of a computer screen, I have strategies to make sure this amount of time is manageable. In this post I will explain why the writing up period is particularly difficult, give an overview of the technology I use and then reflect on strategies associated with the use of this.

For those who have not read my previous posts I suggest that you read the section called my vision. This will give you an insight into how I see the world and some challenges which reading, writing and the environment around me bring.Until recently I have been using assistive technology with some success. I have a MacbookPro and up until the end of last year used ZoomText and Dragon Dictate. On contacting the developers around some issues with stability of both applications on Apple hardware I was informed that both of these applications are no longer supported on OSX.

For those of you who do not know these applications, ZoomText enlarges the screen using an overlay system and offers speech of the text that is on the screen. Dragon is voice recognition software which allows you to dictate what you are writing. While Apple offers accessibility options as a part of their operating system that replaces most of the functions of these applications, there are certain aspects which are not as advanced in the accessibility features built into OSX.

As I have monocular vision with multiple complications this means that my sighted eye does double duty and gets “tired”. The term tired has multiple meanings, for example, my vision becomes more blurred as the day goes on and the muscles around my eye hurt. The glare from the computer screen becomes more irritating, and any fluorescent light causes a hazy environment with bigger halos around lights. The extra reading with my PhD has exacerbated the “tired eyes” to the extent that at the end of the day I read by the shape of words which makes proofreading a long and drawn out process. Furthermore, these symptoms cross over into everyday life, and I have found myself walking along a corridor with colleagues and walking into a door frame then tripping on a ledge.

On beginning my PhD I somehow overlooked the fact that undertaking this research meant more reading. In hindsight I was so enthusiastic about my topic that I didn’t even think about reading and writing but now reality has set in. Dragon would be particularly useful at this moment in time as I am writing up results and discussion and those who know me well, will also know that my grammar and spelling need a little polishing at the best of times. When using Dragon the voice recognition removes many of the spelling errors which is one less stress making writing and proofreading easier with less eyestrain.

One of the strategies I have been using to cut the glare is to wear fit-over glasses on top my reading glasses that filter the light making the screen and fluorescent lights less of a problem. Until I extended my time in front of the computer these worked very well. However, these glasses are not the best fit and finding others that meet the requirement (64% amber that fit over reading glasses) in NZ is near impossible. The more I wear these fit over the more the frame presses on my face causing skin irritation and blistering. As a result, I have been trying to get some clip-on glasses of this, but unfortunately, I have been unable to locate these in NZ. I have been able to find what I am looking for overseas but the providers often do not list the percent of light they let in making selection of the right clip-on difficult when using services such as AliExpress.

One positive thing to come out of wearing the over the top glasses for glare is that I am no longer embarrassed to wear sunglasses inside and I have expanded my range of sunglasses to cut glare to a light grey for indoors and a dark grey for outdoors. The only drawback of these is that they are non-prescription. However, they work well when I do not need to see details.In my research into sunglasses I have located a company that makes prescription wrap around sunglasses that fit snugly around my face cutting a lot of the glare. Even better these are polarized and available in progressive or bifocal glasses. The company which makes these Maui Jim is based in Hawaii and run their own lab to produce the prescription lenses. The frame which works best for me is called the Ho’okipa which are amazing to wear.

Another strategy that I use is to enable the speech on my laptop, but instead of having the computer read the entire screen I select the text that I want to read and use a key combination to start or stop the reading. This method means that I can target the information that I want read rather than waiting to hear the portion of the whole screen. The speech function is particularly useful in proofreading as it means that even if I am reading using the shape of the word there as an alternative audible backup which has proved invaluable thus far.

I hope that this post has given some insight, tips or tricks in both studying with a vision impairment and the importance of selecting the appropriate sunglasses.

How I see it … improving my work environment

In my previous blog post asking for assistance was discussed.  This post will explain why anatomical irregularities in my eye exacerbate glare and how this affects my vision. After this, in the hope of helping others, I will describe some of the changes I have made to my work environment to manage glare.

After a cataract removal, I became more sensitive to light and glare. Even though I was aware that glare may be a temporary side effect the extra light exacerbated some existing problems in my eye causing permanent issues with glare and halos around all light sources regardless of the time of day.

Previously, an episode of acute angle closure (glaucoma) that would not respond to medications meant that I needed to have an iridotomy to equalise the pressure between the anterior (front) and posterior (back) chamber of my eye. While the procedure saved my residual vision, it left a permanent hole in my iris. Due to the position of the iridotomy and the shape of my eye, extra light enters through the iridotomy and causes flaring inside my eye (imagine a flare of light in a photograph or movie).

When I look straight ahead, upward or into the distance, the extra light in my eye causes a band of glare that distorts what I see. This usually means that the majority of my visual field is covered with bright patches. Imagine looking through a dirty window with a bright light shining through it directly into your eye with only a small segment at the bottom of your visual field that is clear.

A side effect of the cataract surgery led to the need for a posterior-capsulotomy as my vision had become cloudy. I had previously had a vitrectomy which meant that the capsule could not be entirely detached, what this means is that in the upper left of my vision I see debris floating when I move my eyes or head. If an overhead light source is present, this causes a spinning flare of light which distorts my vision (imagine a disco ball spinning in your eye).

The first changes I made were to my work environment. My colleagues usually like to have a “window seat” or in other words a desk by a window. However, I want to be away from the glare which means being away from windows. I was fortunate to already have an interior office which had kept the light consistent without glare.

When I returned to work after the posterior-capsulotomy, I immediately found that the light above my desk caused a swirling flare of light each time I blinked. The flashes of light distracted me from my work, and I found that it took more time and concentration to achieve tasks. I worked for several weeks feeling more and more fatigued because of the extra effort to concentrate and ended up wearing a baseball cap in my office. While this cut the glare from the overhead light, it wasn’t the optimal solution as it made my visual field smaller.

One day I was asked by a colleague why I was wearing a hat inside, and he said, “why don’t you just get the light moved away from your desk?” I was lost for words (which is very unusual) as I had not even considered this as a possibility and it seemed like a far better solution than the baseball cap.  At my workplace, moving one light that is mounted in a ceiling panel is straightforward and was completed quickly.  This one change to the environment made a considerable difference. I was less fatigued, able to concentrate, work faster and achieve more.

I realised that subconsciously I had been trying to change myself in an attempt to keep the attention away from the difficulty I was having seeing my work.

On reflection, the reason I was changing myself rather than my environment was that I did not meet the criteria to be considered legally blind. However, I was having difficulty seeing with many of the side effects and problems that those who are legally blind have.  I needed to come to terms with the fact that my vision had deteriorated enough to impact my job.  However, Internally I felt like a fraud because I was having a light moved and engaging with other assistance provided by the blind foundation yet I was not considered legally blind.

Changing the position of the light in my office meant that colleagues began to ask why the light was moved, and I needed to come to start talking about vision impairment with colleagues.

Discussing my vision was difficult, and even today there are only a handful of colleagues that I discuss this with.  The critical breakthrough I made was to begin to describe the variability of my vision from day to day or room to room as well as the impact the environment has.  Furthermore, people started to respond more positively when I discussed the strategies I use.  For example, always walking on the right of another person, sitting with my back to windows and more.

I hope that the experiences that I have shared in this post assist others in similar situations.  The next post I will talk about finding the right pair of sunglasses (and yes there is sport wrap-around prescription sunglasses.

The combined clinician, consumer, developer and mentor voices are valuable in healthcare software development

I am privileged to span the divide between clinical healthcare, academia and the growing digital world and I often find myself translating meaning in any one of these environments for those who work in another.  To give you context, these are the groups I identify with:

  • Healthcare – ED Nurse / former EMT, Practice Nurse, public sector Clinical Nurse Specialist, a paediatric nurse and consumer of healthcare.
  • Education – Lecturer, Clinical Standards Tutor, online education developer and consumer/student (PhD).
  • Digital – User, software developer, database admin, online education designer, PhD Candidate,  *nix user (with the numberplate LNXCHK) and geek.

Today I was able to combine all of these skills to begin solving a health problem at the 2018 “Developers on FHIR” Challenge.  Where the skills of developers and clinicians combined to work together on a health solution.  In this case, interoperability using HL7FHIR framework to provide a solution in managing adverse events in healthcare.

This opportunity was exciting as it allowed me to make links between my previous clinical roles, past research (reducing error and cognitive load associated with weight estimation during paediatric resuscitation), current PhD (mobile application development for paediatric resuscitation) and position as an educator of future nurses.  While these roles share common goals which relate to adverse events each has their own management solutions which highlighted the amount of siloed information and processes we navigate in our health journey.   If this data were shared, with more streamlined interoperability it is highly likely patient outcomes and experience would improve.

Our team met in person for the first time at 0900 this morning after a brief email conversation.  A small amount of preparation, an APP framework, a little background research and beginning of the final presentation/pitch were completed, but there was still a lot of work to do.

What struck me, to begin with, was the diversity of our team, for example, a strong “coder” / masters IT student, an IT lecturer / PhD Student, an IT Tutorial Assistant and myself who all had different strengths, backgrounds and personalities and had never met in person before.

The second thing that struck me about this experience was the passion and words of wisdom from the mentor team from HL7 at this event (Peter Jordan, Martin Entwistle and David Hay).

Interestingly, until now, I had always felt like a bit of an outcast in the clinical world and software development world as I did not entirely belong in either.  Today, I entered this event thinking I had limited experience in software development and would not contribute much.  However, I found that, as a clinician, I could offer knowledge of the environment, processes, as a patient and a consumer point of view and as a developer an understanding of data storage, transmission and app development.  What turned out to be the most important contribution was a combination of all of these skills and the ability articulate both clinical and software development perspectives within our team.

Overall, I have learned a lot today, predominantly that we need to work together up front to succeed.  This means, clinical and digital teams who manage health data need a standard language/interface which is where I believe FHIR is essential.

You are probably wondering what we developed/prototyped?  A mobile APP called “Ad Rec” for adverse event reporting where, patients, treating clinicians, general practice staff and external agencies all contribute to adverse event reporting using common data structures and sources while with built-in reporting to external auditors such as governmental organisation.  Where future research could evolve:

  • Standardising adverse event classification.
  • Simplify user APP user interface.
  • Implementation of reporting such as direct reporting to MEDSAFE or CARM.
  • Integrating different terminology such as patient versus clinician versus analyst needs.
  • Push notifications for clinicians.

Here is a photo of our team at the end of the day after winners were announced.

IMG_2382Photo previously published on Facebook with permission of those photographed.

From left Sally Britnell (RN, Lecturer and PhD Candidate at AUT / Auckland University of Technology), Jun Han (IT tutorial assistant at Whitireia New Zealand), Sarita Pais (PhD Candidate at AUT / Auckland University of Technology and IT Lecturer at Whitireia New Zealand) and Feng (Thom) Zhao (IT student at Whitireia New Zealand).

BTW – our project won.