As I’ve blogged before (here and on e-patients.net), I’m one of the advocates (the Challenge Team) for this year’s TEDMED “Great Challenges” program, co-sponsored by the Robert Wood Johnson Foundation – specifically, of course, The Role of the Patient!
They asked us (the team) to answer five questions. (The original list is at bottom.) I haven’t yet – you can see the other team members’ responses here – for two reasons: I was immersed in my travel and events season, and (probably more importantly) something didn’t sit quite right with me. I figured it out:
It’s upside down to ask us some pre-selected questions – that’s precisely getting “the role of the patient” wrong. So I thought: let’s ask the crowd! Ask the internet what they think the role of the patient is and what it should/could be.
I gave the questions to my friends at Traitwise (see earlier post Engage, Participate, Enjoy!) Traitwise is an interactive, self-adjusting survey tool that responds to user questions. (I have no stake in the company; I just love the idea, because it harnesses the crowd and lets you discover thoughts instead of trying to guess them.)
You don’t just answer the questions – you can comment on them (including suggesting changes), and you can propose questions of your own. And those questions become part of the survey for future respondents. There’s more discussion below, but here’s the survey – dive in!
About the survey
In this survey you’ll find the original questions they asked the Challenge Team, rearranged to be more open-ended – and, I think, to have less implied bias in some of them – and we added a few that we thought would open broader thinking about the subject. The rest is up to you! What do YOU think the role of the patient is, and should be?
Nifty: you can return later and add thoughts.
The different between pre-planned and open-ended:
In a way, putting the questions in survey form is the same as having a dialog on a blog, except it tallies thoughts: you take the questions, you can comment on the questions, including suggesting changes, and you can propose questions of your own.
And in a sense, it takes the burden off the survey designers to get it right: they can take a reasonable first pass and float it out there to collect responses and feedback. Then they can let it run, or decide it needs to be done over.
Mind you, not every kind of survey is right for this: if you want to know if someone’s going to vote for Romney or Obama, it doesn’t need to be interactive. But if you’re trying to find out what people are thinking, why limit the answers?? Why not let them tell you?
It’s an experiment. Enjoy. Bring friends – see what they think, and what they have to say.
The original questions
For the record, here are the original questions as given to us by the TEDMED team. How do you feel when you read these, compared to the survey you just took?
- Name the top 10 contributing factors for the Great Challenge, “The Role of the Patient”
- Is there a conflict between empowering patients and honoring the expertise and authority of medical professionals? If so, what are the tradeoffs and how do we find the best balance?
- How can patients be supported as informed decision-makers and advocates within complex health care systems?
- As many patients become more technologically savvy, how can they and their providers make the most effective use of different technologies to facilitate collaborative decision-making?
- What are reasonable and unreasonable expectations of patient responsibility in the delivery of health care?