Practical learnings from online patient opinion trials

I’m now out of hospital (thankfully); however, the patient crowd-sourcing website I set up whilst in hospital – as a frustrated patient – is still up and running.

helpusimprovekings.org has had mixed success since its launch and we’ve learnt a huge amount over the time we’ve been running it so we thought we’d share these learnings.

From a practical perspective, the key learnings have been:

• Make it simple to use – make sure it’s as easy as possible for users to have their say, and share their experiences with other people.
• Set up a clear proposition, and make sure the proposition is positive – make sure it’s easy to understand what the site is for, and why to take part in it.
• Ideas are more useful than opinions – opinions are different from ideas.  Arguably, ideas are more useful than opinions, and the kind of information you should be trying to get from your patients.  It’s one thing to know whether people “liked your service”, however it’s a whole lot more useful if you could gather ideas of how to improve your service.  Ideas are valuable, and more actionably useful than simple opinions.
• Openly share ideas: providing an “open space” for people to share their ideas gives the user a lot more sense of empowerment than a black-box approach where ideas are lost into a behind-the-scenes database.
• Be ready for trolls: the downside of an open space approach is that you’ll get trolls (and spammers) coming along and publicly adding irrelevant/destructive comments.  This means you need to have an effective moderation process in place to make sure these comments don’t dominate.  Self-moderation is often most effective – letting the community decide what’s relevant.

From a wider-policy perspective, the key learnings have been:

• Have a clear-way of managing/using the data created: don’t be surprised when people start giving feedback and sharing ideas with you.  Make sure you’ve got processes in place to take account of the data given, so you make the most use of it.
• Make sure the data structure fits into existing feedback channels: from a practical perspective, making sure the data you collate from your “online patient crowd-sourcing exercise” fits into your existing patient feedback channels.

Overall, our experiences running HelpUsImproveKings have been positive.   The main thing we’ve seen in creating this online patient crowd-sourcing space is that:
1) People like sharing their ideas
2) Ideas gathered from the coal-face are undoubtedly useful for the organisations.  The trick is how best to implement these once gathered.  Just check out the likes of Starbucks (www.MyStarbucksIdea.com) and Dell (www.Ideastorm.com).

If you’re interested in doing something similar to HelpUsImproveKIngs.org – i.e. create your own centralised crowd-sourcing/ideas-sharing platform, I suggest you check out our “Delib Dialogue” platform.