1. www.Rarerenal.org is the public face of the Renal Association’s strategy for rare diseases. The Editorial Board of Rarerenal.org has a protocol for receiving submissions from authors, and processing them to improve content, form and linguistic standards. This is set out in the current version of the Protocol for the strategy. In managing the website the Editorial Board proposes to conform to the Information Standard.
2.www.Rarerenal.org carries clinical information both for professionals and laity. This means that highly technical information produced for clinicians will be read by patients of all ages and backgrounds. Likewise materials written for patients and carers will be available for clinicians. The format of the website will make it clear what is written for whom, but one has to assume that all of it will be poured over by those seeking information.
3. The order in which information is required is different for professionals and laity. For professionals the order is logical and follows the time honoured layout of a text book. Patients and carers approach clinical information differently, and the order of presentation needs to reflect that. Patients are less concerned about mechanism of disease in the first instance, and much more concerned about the impact of disease on the individual and family. The figure illustrates a suitable order in the grey boxes. Links take the reader to and from the glossary and other parallel information (in pink). These are flagged in the text by <learn more?> and <back>, and these buttons allow navigation.
4. Rarerenal.org intends to break down clinical information into short self contained sections each of which provides the opportunity to ask more detail in a separate linked page, with further links beyond that if needed. The advantage of the website over a textbook is that each section of text can be short and links carry the reader to and from added detail, definition or reference when needed. This technique allows the reader to move stepwise and incrementally through the information checking their background knowledge as they do so. Posing self test questions is a good way of consolidating information, particularly when writing for laity. Some of the links will be common to several disease-based information pages. Authors should therefore list linked or glossary items that they want attached to their text. The editorial board will commission these as needed. Many links will be common across several sets of patient information.
5. Authors should start with very simple explanations and work steadily towards the detail that may be necessary. Patients will pick up the story from the position of their experience (symptoms, affects on family members, preformed anxieties and concepts of health) not from a pathological process however fascinating. So it is better to explain that a disease has certain signs and symptoms well before stating that it is a disorder of mitochondrial function or something to do with a glomerulus! Patients are likely to want to step from diagnosis to treatment options, and only revert to causation or disease mechanisms after appraising how a treatment might work. This is entirely different from the order of thinking of a doctor for whom mechanism of disease precedes concepts of treatment.
6. Authors need to understand the likely reading age of the target audience. For professionals there is no reason to restrict the complexity of what is written, although lucidity is a basic requirement. However, when writing for patients the target reading age should be 11 years which is about what you need to digest the average UK tabloid newspaper. Sorry but this is true! If you want to check the reading age using an automated system paste your text into the Gunning Fog Index.
7. Much clinical information that is generally available on internet sites is poor. That may be because it is incorrect or outdated, or it belongs to another country or culture, but more often it is simply unintelligible for the target audience. Some of this relates to inflated assumptions made about the reader’s entry level of knowledge. The use of medico-scientific jargon, or poorly chosen euphemisms can readily disguise real meaning. The editorial process, which for Rarerenal.org is itself evolving, should help defend against some of these issues. Both authors and editors are embarked on exploration of how best to convey complex and highly charged information.
8. Authors need to bear in mind the emotional impact of the information they prepare for patients and carers. These readers are likely to be anxious, perhaps newly diagnosed and unfamiliar with their new circumstances now impacted by illness or disability. Naturally they will focus on statements that resonate with their particular situation, perhaps taking information out of context or weighting the information in a way not intended by the writer. A statement that is in essence factual may have the impact of offering unfounded optimism or the converse. If so, the judgement or valuation of the clinical information is not whether it was technically correct, but what impact it had on the ability of a patient or carer to make sense of, and indeed the best of, their response to illness. Did the information strengthen and empower, or mystify and de-motivate?
9. The above does not mean that information should have its factual basis eroded. Quite the opposite. An honest presentation of facts is essential. A common trap for clinicians delivering bad news, and some of the website content is bound to be just that, is to soften facts in an attempt to placate anxieties. A good website sticks to facts but introduces them in an orderly and logical way so that the information can be assimilated incrementally and build in the mind of the reader a proper reconstruction of reality. One has to trust that this offers the best framework on which emotional adjustment takes place.
10. Patients want to know about the experiences of others very early in their fact finding. This means that patient support groups and patient stories need to be high on the agenda and displayed early in the disease specific advice. They should be attractive to the reader and include illustrations as much as possible. Advertising patient group meetings is a priority. The resolution of isolation and anxiety that comes from the patient open meetings is tangible, and this benefit can be brought forward using the website.
- The Patient Information Forum gives good advice. The link takes you directly to a summary of best practice for writing for patients.
- The Plain English Campaign likewise has information about the production of clinical information. The link includes some ghastly if entertaining example of how we are not going to do it.