Yesterday I was at a meeting, which was discussing policy. This seems quite abstract as I write it, and perhaps it is. What happens once a policy is written? If it is a large organisation it acts as a rudder, guiding the activities of sections of the activity. This will have an impact on the users of this business, and ultimately, on our community. Policy is very important!

As I was reading the document there were a number of things I observed. These documents often look like a legal text. If this, then that, or else something else, and it gets quite confusing. It is even more difficult if you have cognitive problems, such as short term memory difficulties. The type font, spacing between paragraphs and sentences can make the text easier to read, or more off-putting. The writers of the document made some attempt to add more space, but still the content looks complicated.

What is the effect of the way the document looks? My belief is the appearance is critical to ensure the potential reader actually makes the effort to take the time to read the document. Often, once you see something like this you decide not to even attempt to understand what it contains, and so you then ask someone, who you think might have read it, to explain what you need to know. This can create a systemic misunderstanding of the policy, if that person didn’t understand what was written. It will alter the intended course of the organisation.

What did I do?

At this meeting I am a public participant, attempting to make whatever is written more accessible. Easier to read, and understand. When sharing my experience I highlighted as by illness is progressing my ability to understand complex documents, or concepts, is becoming more difficult. I feel it, and it has been personally challenging, because I am losing something which I had always found easy. Because of my experience of both circumstances, I can share this observation.

This exposing of the flaw in the document is important, and it is critical I share my viewpoint. Expressing it clearly, with examples, can help the writers of the policy to change how it is presented. If they actually listen and then implement change, then future readers of the policy will understand what they must do. They will be able to do this by themselves, which is empowering on its own. A well crafted document is inclusive. One member of the panel observed this doesn’t mean the content should be extremely basic, it means the writer must really know the content.

To aid this process I recommended a flow chart, or diagram, explaining how the policy works. If the reader sees this, it can help them understand the policy better, and the words will add extra depth to their understanding. By using footnotes it will be possible to add even more content, for those who wish to know more.


If they don’t change the document, then the organisation will lose, as the policy will only be read by a few, perhaps put in a drawer, and occasionally it will see some light. However, if it is written in an inclusive way, as I have described, it should positively influence the direction of the business. Wouldn’t this be amazing. In this case, I believe they will change the document, or perhaps have two versions, the legal type, and another which will incorporate the changes we recommended.

Yes, one voice can change something important. As a Patient Advocate I am using my voice to make change!!

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