My Journey with OPFORD (Open Platform for Rare Diseases)
I’ve always prided myself on being a medical/health writer who can crunch medical terminology and write for a scientific audience. OPFORD (Open Platform for Rare Diseases — www.opford.org) turned my attention away from scientific audiences to writing for the public. It was no longer about writing to “show off” my muscle in scientific competence but a journey into writing for those who really need to understand complex stuff in simple form. It was all about connecting to the real — the world of patients, parents, caregivers and communities. Here are people already caught in a whirl of the medical world looking for quick and easy-to-understand information. We wouldn’t want them to get into the platform and go away confused.
OPFORD’s huge challenge was how to design easy-to-find content. What do patients and parents first look for? Disease-specific information? List of clinical geneticists? List of doctors and hospitals? Latest news and research updates? This meant getting down to patient communities and researching the journey of patients diagnosed with a rare disease. How can we best serve them? How can we make their journey easier?
OPFORD’s UI was designed after a deep brainstorming session on patient needs and experiences. First, the patient and family will want to read up about the specific disease (if he/she is already diagnosed). If not diagnosed, he/she will need to check out the list of clinical geneticists to locate the closest bet. This will enable them to get a diagnosis or at least get some info on what next. If the patient is already diagnosed, he/she might want to check out the list of doctors and hospitals. This will nail down treatment centres. After all this, the patient and family definitely need some moral support so they can check out our list of patient support groups. Last, all patients and families are always eager to get to know about hope for a cure. Our list of rare disease updates enable them to access information about latest research in drug development and therapeutics.
OPFORD’s success as a help and support platform is evident through Google Analytics which lists 492 users in a matter of 3 months! A moment to be proud of for the OPFORD team comprising Dr. Vijay Chandru, Dr. Prabhakar Rajagopal, Sukanya Dhansingh, Reena KM and me! OPFORD’s logo and graphic interface were designed by Vinod Kumar.
OPFORD has been a great experience for me in terms of medical content writing, UX research, UX writing and microcopy. It is not everyday that one gets a deep dive into the many facets of a web platform.
