Projects: Diagnostic photo library

We have created a searchable online library of PEM images that we hope will aid diagnosis. Our motivation came from a survey of our PEM Friends members which showed that only 3% of respondents were diagnosed by a GP. This is perfectly understandable given the rare (or uncommon) nature of our diseases, but delayed diagnosis can lead to harsher treatments and worse outcomes. Most of the photographs in the library were sourced from the approx. 700 PEM Friends members, with some additional contributions from groups based abroad.

We were awarded a grant from the British Association of Dermatologists (BAD) to fund the project costs. We approached the Institute of Medical Illustrators for advice about image selection and consent. They led us to Sophie Kibbler, a medical photographer, who continues to work with us. We defined a list of metadata such as diagnosis, severity, body site, age range, etc to collect with each image. This list was refined using suggestions from delegates at the 2022 BAD conference in Glasgow. To ensure the project would meet its objectives we solicited the advice of Dr Tim Cunliffe of the Primary Care Dermatology Society and Dr Sonia Gran of the Centre for Evidence Based Dermatology at the University of Nottingham.

Image shows an input form that prompts the patient to enter the body site, severity, diagnosis, ethnicity, age range and gender of the patient when image was taken. The form also asks when the image was taken relative to diagnosis and allows the patient to select images to upload. — Form used to capture patient information and images

Sophie developed a protocol document that guided patients in how to provide the best photos and to give appropriate consent. We created a web form to upload the anonymous metadata and photographs from patients and built a database and gallery to display the annotated imagery on the PEM Friends website. We advertised for participants via our private Facebook group and mailing list and received hundreds of images. Sophie applied the same rigorous criteria when selecting images as she does during her day job. Approx. 40% of the images were chosen, consequently the library contains 160 images at the time of writing. The image library can be filtered by diagnosis and body site.

Image shows a gallery of patient photos, and two controls that allow the images to be filtered and sorted. The first control sets the diagnosis and the second control sets the body site. — Screenshot of photo gallery showing filters used to search and select images

Tim recommended that we add a diagnostic ‘front-end’ to the library. He wrote very comprehensive content about immunobullous conditions, which was agreed by Dr Phil Hampton, a consultant dermatologist in Newcastle, and we incorporated the text into a simple web tool. The tool is driven by how the patient presents and contains links that display relevant library images for a particular diagnosis.

Images shows 4 expandable tabs. Each tab relates how a patient's blisters might present. One of the tabs is open and displays different diagnoses and the related sites, lesion types and the age range the diagnosis predominantly affects. — Screenshot of the diagnostic pathway tool with content written by Dr Tim Cunliffe

The photo library will continue to grow. In addition to the contributions from our PEM Friends members, we also received inputs from fellow support groups Pemphigus Africa and the Association Pemphigus Pemphigoide France. We are proactively seeking to extend the already diverse range of images to include any under-represented categories and are working with the International Pemphigus and Pemphigoid Foundation in North America and others to achieve this end.

The PEM Friends Diagnostic Photo Library and the Diagnostic Pathway can be found under the "Clinicians" menu on this website. We are very grateful to the British Association of Dermatologists for funding this work.