I’m delighted to introduce my first guest blog from a patient.
She articulates very well the challenges of finding reliable and relevant online information and communities that are directly relevant to patients. It also includes a call to action for Doctors to get online.
Generic versus (very) personal information
Personally.. I don’t want to be a patient.. It’s totally the last thing I want to be…Before my diagnosis I shamefully has no idea what Rheumatoid arthritis (RA) was or what the consequences were of having a Chronic Illness. As I say to my Rheum..”Being Chronically Ill is a busy business”.
Interestingly, at diagnosis I was told by my rheum NOT to look on the internet for information because it would scare me half to death, whilst GP gave me a list of websites that she felt would help, in particular NRAS, Arthritis org.ETC..
Actually went with my Rheum, and didn’t investigate my condition and just had total faith in the fact that He/She totally knew what she was doing..
Unfortunately humans need answers immediately..even more so if your ill.. So where do we go? And how do we know if the information is correct? Most official sites offer information that is so generic that it doesn’t take into account the personal aspect of how Chronic Illnesses affects your day to day existence.
However personal blogs ( or the most part) are just that..Personal..offering information about that individual..and how that individual deals with their own Illness. There may be some similarities but not enough to give you the answers you were looking for.
Patients Like Me
The Patients Like Me Website is a great idea in theory, but the execution is poor..and visually it kinda looks like a dating website for the sick !!
Its essentially focuses on length of illness,meds etc..You are reduced to being, well, just a Patient and it has been know to be a breeding ground for pity parties.IMO.
Information from strangers can be a bad thing, just because we have the same diagnosis,and take same meds doesn’t mean our outcomes will be the same.
NRAS (UK National Rheumatoid Arthritis Society) do something similar called Healthunlocked, which I’m sure your familiar with..I was staggered at the mis-information and wrong advice that was given out, with no moderator.
Maybe sites like this could work in the future? But only if a crack team of medical personnel were involved to stop us brain fogged patients from dishing out the wrong info.
So why do we flock to Facebook and Twitter..?
If I’m making a decision about my wellbeing or changing Meds, I would normally call my Rheum Nurse, but its Saturday 7.30pm and I want reassurance that upping my MTX is not going to make me feel like a poisoned parrot and side effects will pass..
On Twitter and Facebook, and on other social networking sites the beauty is, after a time, you get a feel for the people your connecting with, personalities shine through posts. Are they funny? Do they just complain all the time?, Do they have a moderate attitude to there illness? Is the information factual? All of these are indicators as to whether their advice is relevant and sound.
Because Patientslikeme.com is solely based around being a patient, there no real way of validating the information.
Klout has more promise simply because its based on influence and validation.
Patients and Doctors will find a solution together
One of my best friends is a Consultant ENT surgeon and we were discussing this topic the other night..Medical Professionals and Patients WILL find a Social Media solution together. We are not there yet, but it will happen.
Unfortunately the hardest change will have come from YOU GUYS! My ENT buddy said that he wouldn’t put himself out there, he said he would “never have a life outside of work?” he predicts that people would send him questions all the time and what if his advice lead to something going tragically wrong?..That gave me pause for thought.
Its quite something to put yourself out there…
THANK YOU for putting yourself out there, You’ve already set the standard.