Patient Readers’ Panels – Behind the Patient Groups
The people behind patient group content
One of the biggest strengths of patient groups is creating content that their communities find useful and relevant, and making this easy to understand. Creating materials which can engage diverse audiences with different experiences, needs and health literacy can be challenging. That’s why the mostly unseen teams of patient readers’ panels can be vital. We look at how three patient groups support their panels.
Step 1: Publicise the readers’ panel
Crohn’s and Colitis UK bring together on one page stories told by volunteers with different roles in the patient group. These stories bring to life both what the readers’ panel does and why it is important.
As one of their volunteers, puts it:
“If someone with Crohn’s or Colitis benefits from reading an information leaflet that I have helped to develop then that makes it all worthwhile.” – Jake, volunteer, readers panel Crohn’s and Colitis UK
Step 2: Make it easy to join up
Age UK make it easy to find out and join their readers’ panel. There’s a prominent link at the top of the page of the organisations’ list of factsheets with the statement:
“If you’d like to help us improve our guides, why not join our Readers’ Panel?”
This then takes you to a short page outlining the role of the panel. This ends with a quick form to express interest, including indicating if you have any areas where you may want to focus, such as information on health and wellbeing, work and learning, home care or finance.
Step 3: Induct and support the readers’ panel
The UK patient group Lymphoma Action produce a helpful guide for their readers’ panel, explaining how the group reviews and produces documents, and crucially, why they do it this way. Currently they have around 50 volunteers who review materials like the website, downloadable booklets, and books.
The induction guide addresses Frequently Asked Questions, shows how the review process normally works in the patient group, and how documents are structured and marked up for review.
The guide outlines the scale of commitment by the small publishing team for each item, excluding the voluntary review hours from the panel team members:
“We start researching books 7 months before they are due to be published. On average, a book takes 45 hours to research and write, 25 hours to edit and publish, plus an extra 25 hours of production (typesetting and printing). Webpages are started 4 months before they are due to be published. A typical webpage takes 15 to 20 hours of writing and 15 to 20 hours of editing and publishing.” – Lymphoma Action
Another factor is that their production cycle includes the aim to review and update medical information content at least every three years.
As the group puts it:
“Seeking external feedback is an important part of our publication process. It means our information is checked by medical professionals for accuracy, and also by non-medical ‘lay’ people for ease of understanding.” – Lymphoma Action