DISQUS

Reed Smith · 1 month ago

I guess it would somewhat depend on trust, right? I mean healthcare is very much local so if I look local for information it would have to be to someone/organization I trust.

If I have a great relationship with my PCP then I will probably take their word and advice over what I find on the web.

I think this is where hospitals have to continue to interact in the social spaces. By doing so they become trusted and thereby an influencer.

In the end I think it is going to be hard to create a network of health info outside of Google, etc... And maybe that is OK...

philbaumann · 1 month ago

Certainly! Trust the at the center and circumference of health care. Hospitals will have to get more involved and it's going to take a lot of leadership that's been sadly missing over the last 10,000 of the Web.

But 2009 seems to have been a bit of a turning: at least a small but vocal minority like @LeeAase of Mayo has advanced the cause. We'll see what 2010 brings.

amcunningham · 1 month ago

Hi
Very interesting post. I have been thinking about a way of pulling together accounts of patient experience (anything-living with an illness and effects on daily life, or negotiating healthcare and medicine0 that we can learn from) for medical education. Rather than having a central repository I wonder if it could be managed by getting patients to self-identify relevant posts and save them to delicious, or just tag the original source. I want it to be a living resource. And I want it to be open to everyone. Is this what you mean by the organic nature of the web?

I think the jury is still very much out on communicating with patients in public forums. Maybe this is paternalistic of me.... but it is something that I want to think a lot more about. I think that patients should also be very careful about making details of their illness experience public AND linked to them. I know that privacy is a rapidly receding concept but it is something every one should think about before posting anywhere. And it's a reason that I encouraged @Leeaase to put their warning to patients on posting publicly on the first page of the Sharing Mayo site. He did.

philbaumann · 1 month ago

Agree - privacy will have to be thought out. And certainly hospitals and other hosts for these communities will need to provide visible, clear and understandable guidance regarding privacy.

It's a challenging balance between privacy (and dignity) and the utility of searchable public data that may benefit another.