Comments

1. 

   Thomas John Rose 22 Jul 2019

   Much valuable improvement could be captured and used as a result of this project. The design of the PRD collecting mechanism and information requested is very important as is codification of the information. Will these two issues be addressed during your project or will you use existing methods?

   1. 

      Isabel Ho 22 Jul 2019

      Hi Tom, we are working with patients and colleagues to come up with a minimum set of data we want to collect and build prototype for testing as a starting point and we will adapt the design as we learn what work and what doesn't based on feedback. We are in the process of working out the technical details, collating feedback from everyone in multiple design-build-test cycles.

2. 

   Jack 18 Jul 2019

   Hi team,

   This is a great sounding project and I think there is a lot of scope for collaboration between us.

   Our app supports cancer patients to collect, track & visualise data about their care. We intelligently integrate data on symptoms, side effects, medications and appointments with lifestyle data (exercise, sleep, diet and more) from smartphones and wearables. We are continually assessing how best we can utilise the app's date to improve service provisions and improve cancer care, which seems to overlap a lot with what you are working on.

   It would be great if you could take a look at our idea on Q Exchange for a project focussing on people living through colorectal cancer and offer some thoughts here: https://q.health.org.uk/idea/2019/supporting-colorectal-cancer-patient-self-management/

   It would be great to open a conversation on how we may be able to collaborate beyond this also!

   Thanks very much,

   Jack

   1. 

      Isabel Ho 29 Jul 2019

      Hi Jack, thanks for the comment and look forward to speak to you and your team in the near future.

3. 

   Anna Burhouse 11 Jul 2019

   Hi team,

   i tend to find it helpful to think about patient engagement and co production throughout the different stages or phases of a programme. For instance in work we did to set up a recovery college, patients, carers and interested citizens ran the co-design phase and held a series of meetings to listen and learn from others, we also went as a group to see the first college in the U.K. and speak to their co-production leads.

   Some people from this group then helped us in the implementation phase, joining governance structures or joining the delivery team as peer trainers or experts by experience. Other people contributed technical skills like marketing advice to create leaflets and web design. I think this sort of technical/skills based support is an often overlooked element of co-production, it’s not solely about people’s experience of being a patient which is so valued, people often have a range incredible skills they want to contribute. We had many people offer to be trained to teach and gain a PG Cert or to coach etc. One person offered to help set up a community social group. Some people got involved as improvers and had QI training.

   In the realist evaluation phase people also helped to facilitate focus groups to help the independent evaluator gain qualitative data etc.

   When we were trying to get the work sustainably commissioned, at the end of the first three PDSA cycles, people with lived experience created presentations, came along to meetings to share their stories and helped in incredible ways.

   I’d encourage you to think creatively and be open minded about what might emerge, because the co-production process by its nature cannot be nearly boxed in. I learnt to love the fact that ideas emerged that I would never have dreamt of at the beginning. The approach we took led to innovations in our Trust’s approach to volunteering and co-production and we had to make changes to governance, recruitment and funding arrangements. It was not always easy to do, but it has helped us to sustain this work for over 8 years now and it is constantly evolving.

   Good luck!

   best wishes

   Anna

   1. 

      Isabel Ho 29 Jul 2019

      Hi Anna, thanks alot for the comment and lots of tips via different group chats, i love the idea of people with lived experience created presentations and is something we can definitely consider if our patient reps are keen, in fact sharing the experience of their cancer journey have been such a valuable lession and incredibly powerful, helping us all to focus on what matters to patients and think from their perspective in everything we design. We would be able to adapt as we gain more insight in what works well / not so well and apply the learning incrementally through continuous dialogue with patients / patient groups. Fingers x!

      Isabel

4. 

   Thomas John Rose 2 Jul 2019

   What application do you use to store and analyse the data you have collected?

   1. 

      Thomas John Rose 3 Jul 2019

      Isabel, Have you thought of local Access databases and a coding system for your data? I have found this to be very effective, in terms of simplicity, analysis and cost, in the past. Regards Tom

   2. 

      Isabel Ho 2 Jul 2019

      Hi Tom, we are working with innovator of the patient experience SIG on Q so we know what is possible technologically and data ownership is something we will need to look into in the refined proposal.

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