I attended a fabulous un-conference*  yesterday about healthcare.

I knew in advance I would want to lead a session (anyone can if they like) and I mulled over 4 topics:

1. finding ways to extract and package parent knowledge to better inform healthcare practices
2. finding ways, through opt-in social networking strategies, to connect people with similar diagnoses (or other health-related commonalities)
3. finding ways to make healthcare data and patterns available to patients and their families, for the purposes of personal long-term planning, risk management and decision support
4. finding ways to build compassion and transparency into institutional communication, workflow and process

I went with number 3.  The session was well-attended with lots of great conversation and ideas.

This was my favourite:

Imagine this: a website, for parents like me, to map empirical research data against ACTUAL PATIENT EXPERIENCE.  A chart that shows long-range, longitudinal effects of medical, surgical and therapeutic decisions.  Including a Quality of Life measure that indicates patient/family satisfaction.  For example, cochlear implant surgeries are highly successful from a medical/surgical perspective.  But how happy are the children?  The parents?  What about children with multiple disabilities?  Do these numbers paint a different picture and how would those results influence other families’ future decisions?

So great to brainstorm with smart, engaged, interesting people.

I’m thinking about starting a CareCamp – an un-conference for caregivers to share ideas and stimulate change.  Anyone could come with the intention of supporting those who support our most vulnerable population.

Would you come?  Can you help?

* Do you know about un-conferences?  The camp model of un-conferences came out of the tech industry and has oozed to other sectors.  Basically, anyone can come and sign-up with the understanding that you are interested in the topic and are prepared to engage about it.  There is no agenda;  instead, after the groundrules are established, the attendees decide what they want to talk about.  Anyone can post a topic on the Grid (there was a big, taped grid on the wall, with rooms labelled across the top and timeslots down the side).  Once all topics are posted, attendees can decide where they want to go for the next session.  Popular topics have more people, less popular topics have fewer.  People can come and go.  Sessions expand and collapse.  At the end of the day, everyone gathers to determine actionable items and who needs help with what.

Healthcamp Toronto was sold out with 75 people, and attended by doctors, patients, Ministry employees, software developers, patient advocates, hospital administrators…  thought leaders in healthcare from many areas.   Cost?  $25.  It’s organic, open source and fabulous.  The only real rule is that someone has to take notes and post them to the website/wiki.  Here are our collective notes:  http://healthcamp.ca )