Secure messaging in RPV piloting now

We originally hoped the NHS would find a way to send secure messages between staff and patients, but it hasn't.  So we're testing it inside RPV.   It's piloting in Edinburgh at the moment, and if it works, next thing will be to talk to other units about switching it on, unit by unit.
It works by sending an email (or in the future maybe a text message) to tell you there's a message for you in RPV.  You log in to read it. Exchanges are recorded as 'conversations'.  So far so like Facebook. 

There are a number of problems to work through to get this going:

• Should patients get a full list of all possible staff recipients (might be scores), or just a selected few addresses to send messages to?
• If a few, how do you choose them, and keep those lists up to date?
• Should staff recipients be individuals, or some kind of group address?  Things to be said both ways. 
• If individuals, how is it managed when they're away?
• Staff are concerned that it will ruin their lives.
• This is definitely creating something more than is currently held in Unit records. We've been cautious about doing that.  

Staff will need to use RPV more.  That's probably a good thing, we hope they'll appreciate how useful it is to patients.

Support to test this idea is coming from an EU Grant ('Sustains') in which the Scottish Government is a partner.  So the first pilots are in Scotland, but if successful anyone can have it.  We'll report back.

New Renal Disease Registers have first recruits

The UK's new Rare Renal Disease Groups have entered a new phase with Registries for each now opening for patients across the country.  13 groups will soon be able to enrol now in a process explained at www.rarerenal.org
(staff users see bit.ly/radaradminguide)  This way, patients with rare diseases can be linked together

• To share information with each other
• To share their data for the benefit of understanding and research

The lead groups are starting to enrol now but soon all will be going.
You can read the full list of diseases at rarerenal.org though not all are quite ready to start.  You can also read full criteria for joining here.  Ask your consultant in or after June if you are a patient of a UK renal unit who should/could be a member of one of these groups.  Enrolment is rolling out across the UK now; not all units will be ready for you yet - but it shouldn't be long. 

This development has been undertaken jointly with RaDaR.  Joined a disease group just needs your additional permission to share your data with the Group.  An earlier post has more info. 

We broke the forum

We posted questions about the value of the Forum in RPV earlier - and had decided to close it.  It was never very heavily used.  We know that many users were instead chatting away in online discussions elsewhere.
Two have been repeatedly recommended:

• Facebook's Renal Patient Support Group (search for it in Fbk).  This is open to anyone to read at the moment, but may have a trial of being a closed group soon.
• The Kidney Patient Guide (KPG) Forum is older, but is really excellent (click on the forum name, or link directly to forum itself here).  It's had over 52,000 posts. 

Both of these are very active and supportive.  

We're posting this now because the latest new version of RPV, with several features we'll report on soon, broke the RPV Forum.  So it's disappeared sooner than we intended, but we're inclined to leave it broken, if that's OK.  In the next version in a fortnight, we'll remove the Tab and you'll never know it was there.

If  you think this is a really bad idea, or otherwise, comments below are welcome.