This blog post will be both personal and professional. Perhaps mostly personal, but since this is also my field of research I can’t help but reflect. But let’s start with the personal.
A few days before christmas, my dad started coughing blood (after suffering a “bad cold” for months) and was sent to the emergency room. He was admitted to the hospital Friday night so that they could do an x-ray of his lungs. When he finally had the examination, it turned out it wasn’t a blood clot (as suspected) but cancer tumours. And lots of them. After being given this news, a bunch of referrals to different clinics and a prescription of mild pain killers – we were sent home. Needless to say, Christmas was not as usual. We quickly cancelled all other plans and stayed at my parents house. After everyone else had gone to bed (not sure anyone actually slept though), I stayed up reading everything I could about lung cancer online, ordered materials from the patient organisation Stödet, and searched for an online patient community in Sweden. And I couldn’t really find one.
Luckily for me, in September I went to the MedX-conference at Stanford, and there I met the amazing people at Smart Patients – “an online community where patients and caregivers learn from each other”.
Me, Sara Riggare (PhD student at Karolinska Institutet), Ron Zeiger (co-founder SP), and Johan Eltes (Inera). The picture was taken by Gilles Frydman (co-founder SP) at the Smart Patients office in September 2015
I quickly set up an account an had access to amazing support and advice from patients and family members who had been in the same position as me. I vented and despaired and they encouraged me and acknowledged the pain. Which was a relief. When we later on found the origin of the metastases, I moved to the kidney cancer community within smart patients, and found excellent information on medications, the clinical trial we were offered to join, alternative treatments – you name it!
Today I was asked to give som feedback on the Smart Patients’ services, and I thought I’d share my answer to the question “How has smart patients helped you?”
In several ways;
(1) support from people in the same – or similar – situations during difficult times. It’s a relief to have a safe space to share and worry and regain hope
(2) excellent advice – I get both answers to my questions, and recommendations as what to do/ask next.
(3) education – browsing other patients threads and using the “explanations” of abbreviations, medications etc is so helpful! Learning about important issues, but also terminology. Makes dialog with healthcare easier, and it also facilitates my own searching for information outside SP.
In summary, I recommend finding a good online patient community to anyone faced with difficult health issues. Not just for the support it lends, but also for all the knowledge you can gain – knowledge that can be essential to get through challenging times to come!
[post 9 in the #blogg100 challenge]
Participatory eHealth 
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