Tilly’s reflections on NHS Citizen’s design days in Leeds

Over the course of two days in Leeds the NHS team was joined by a fantastic team of citizens to work through the entire design for NHS Citizen: Discover; Gather; and Assembly.

As always this was a huge learning experience for us, I believe we’ve taken some very important steps forward and I have a few reflections I would like to share with you.

Building the online conversation

1. For the course of the two days I was taking care of the Twitter account for NHS Citizen and Clive from Involve was bringing the online conversations in to the room. It seemed to me the online conversation wasn’t as active as it has been at previous events.

2. There are a number of reasons for this; firstly the Internet available at the location we chose didn’t have the capacity we needed. At one point the webcast failed and to get this back online we were unable to get wifi in the building, this meant that at one point the webcast went down and our online viewers weren’t able to see what was happening in the room and then, when that was fixed, those inside the room were unable to join the online conversation. If we really want to bring the online and offline conversation together we need to ensure that the locations we chose have adequate facilities and this is something we are going to take extremely seriously in the future. Clive did a brilliant job of bringing what was being said online in to the room, but in the future we need to ensure this is easier and that those in the room can respond.

3. Secondly, I think we need to spend more time in the weeks leading up to the event ensuring that we are building conversations for the event, tapping in to new networks and ensuring people know they can take part online and watch the live-stream.

Better communication of what NHS Citizen really is

4. A number of citizens, online and offline, are still unsure as to what NHS Citizen is, what it will do and just how radical it is. This is about how we communicate the vision and we will be working hard in the coming weeks and months to make sure we are cutting the jargon, being clearer and more concise and also being more confident in explaining exactly how different NHS Citizen will be.

5. We have already begun this work and the brilliant CHANGE has been helping us to write an easy-read version of our vision document, which will be publicly available soon. They are also helping us to tackle the problem of jargon, pulling us up on the way we are communicating and helping us transform the way we let people know what we’re doing and what the opportunities are. This jargon busting will be incorporated in all versions of our documents, as well as the easy-read, and if you have any suggestions, comments and criticisms please do get in touch.

Not replicating existing power relations 

6. During the two days we tested the Assembly layer and it was immediately clear to citizens and the NHS Citizen team that we were replicating the existing power relations between patients and NHS England management and Board. We need to find a totally new way of framing this event/relationship.

7. To me this ties in to reaching beyond the ‘usual’ suspects and allowing citizens to speak for themselves rather than through people they may never have met. This is extremely difficult, as we need to find a way to ensure everyone is heard, including those that are already doing vital work in patient representation and voice. How do we reconcile the need to make sure representatives are heard and their vital work and experience recognised as well as those who have no representation?

Not reinventing the wheel 

8. As said above there is fantastic work going on inside and outside of the NHS to ensure that patients’ voices are heard and standards are maintained across the NHS. We need to ensure that these groups know that we are not looking to silence them or duplicate the fantastic work they are doing. Some of this is down to the way we are communicating NHS Citizen to the outside world but this is also about making sure that these groups are heavily involved in the design process and that they can find ways that NHS Citizen will support them in the work they are already carrying out.

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