Haven’t we all been there…. Had a headache for days now that just will not get any better? Or the little one’s are wildly describing symptoms and we just can’t figure out what it might be?
Nowadays, if it’s not an emergency, many of us will consult Google before we even go to see a GP, just to see what the symptoms we are experiencing COULD mean. And then it comes.....cancer, autoimmune disease, thyroid … we are left thinking that it could be everything and nothing.
Doctors have again and again spoken out negatively about us researching our own symptoms – understandably, because some will come in to see them and feel like they already know what’s wrong and what treatment is best, they just want it to be confirmed.
Personally, I don’t think Doctor Google is the one to consult when we are not well. We should always go and see our GP first – someone who will see us in person and can the symptoms into context for us.
But what if we have already done this and there is still no diagnosis, even they don’t know what’s wrong?
That’s what happened to Deanna Brownlee. For over a decade the 29-year-old saw about 20 different doctors to get a diagnosis that would match up with the symptoms that she had suffered from for so long: psoriasis, brain fog, chest pain, joint and foot pain, and burning cramps deep inside her arms and legs and a body often covered in dark bruises. Her hair was so thin, people asked if she was going bald. But none of the doctors could come up with a diagnosis as to what this might be. It was then that she heard about CrowdMed — a website where "medical detectives" offer to figure out the root cause of elusive ailments — and uploaded her medical records. Within days the medical detectives came back with a reason might be feeling sick: Ehlers-Danlos Syndrome, an inherited condition that affects the connective tissue between the skin, bones, blood vessels, and other parts of the body." After chasing a diagnosis for more than 10 years, it was such a validating experience," she said. "Just when I felt like I was drowning, CrowdMed appeared in a lifeboat."
Whilst this doesn’t change my opinion about 'Googling' symptoms and trusting the outcomes of this for easily distinguishable symptoms that doctors can treat and identify, I do see the value of the above for anyone suffering from rare diseases or symptoms that doctors do not have the answer to. And it is important to understand that CrowdMed doesn’t work like Google, it is not automated and generic but individual – with (anonymous) patient record and history of the illness to see for all the verified medical professionals as well as Dr. House fans to examine. They can collaborate with the patient while all identities are kept secret. In the past five years, CrowdMed has solved more than 2,000 medical mysteries. Before joining the site, the average user has struggled with illness for over seven years and consulted over eight different doctors.
It is so easy to demonise the web and all things digital health, but over the past years the advances in digital health have been truly admirable and are designed to help patients and most importantly help them to take back control of their life’s. So while I still trust my GP first, I am excited to see further progress in the world of Digital Health, a sector that is one of the most innovative and rapidly growing within healthcare at this moment in time and what value they can add to a patients life.