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What is the challenge your project is going to address and how does it connect to your chosen theme?

WHY? Around 150,000+ cancer patients receive radiotherapy &/or chemotherapy annually across the UK but we know little about the quality of services from Friends & Family Test and National Cancer Patient Experience Survey. Service providers need individual-level data to guide quality improvement in Oncology that is currently not routinely collected by existing cancer datasets held by Public Health England.

HOW? Building on experience in collection of patient outcome data, we have designed CURIE-Collecting, Understanding, Responding & Interpreting Electronic data, a direct collaboration between service providers and patients to codesign, coproduce & codevelope an effective way to collect PRD at scale, benchsharing findings with not only radiotherapy community but a wider oncology services nationally in near-real time.

We use a core set of ideas and implement in 2 matching halves, QI project & clinical trial (CT). Both approaches will collect the same core datasets at the same time points.

What does your project aim to achieve?

AIM:

To incrementally assess and improve the electronic collection & feedback of PRD in cancer patients in order to help drive continual quality improvement in cancer services

OBJECTIVES: 

• Collect PRD data for cancer patients, include patient groups which are relatively silent in National Cancer Patients Experience Survey (NCPES) and Friends & Family Test (FFT)
• Compare effectiveness & efficiency of different PRD collection methodologies i.e. ongoing quality improvement project vs clinical trial
• Codesign, codevelop & coproduce a patient-driven methodologies to facilitate participating member departments to capture relevant and meaningful PRD
• Benchsharing results with the wider radiotherapy quality community for collective learning
• Investigate different electronic tools available
• Deliver near-real time feedback of PRD to allow a rapid improvement cycle in participating member departments
• Gain insight on cross-boundary project working collectively in radiotherapy quality community

 

How will the project be delivered?

WHO/SKILLS:

CURIE is supported by oncology professionals across multidisciplinary backgrounds in UK & a range of cancer patients. Project members consist of Clinical Oncologists, Therapeutic Radiographers, Clinical Nurse Specialists, Trial Statisticians, Researchers, digital health innovator and patients, a mix of Q & non-Q members. We have a combination of strong clinical,technical & operational experience,including the design and delivery of multi-centre healthcare projects.

APPROACH:

Codesign core themes including patient reported outcome & experience meausres. Both QI & CT approaches are designed to be patient driven to reduce administrative burden. PRD are collected at 3 different time points along the care pathway. Funding will be used to support implementation of QI appraoch to prove feasibility to carry out CURIE to monitor service quality & embed process for continual quality improvement.

RISKS:

Poor take-up by patients & providers. Sensitivity around performance data sharing.

What and how is your project going to share learning throughout?

This project idea started in 2017 & has gained momentum since then. Project progress is communicated via a single common electronic email platform on JISCMAIL & shared by all project group members.

Project development & progress are shared with all RTQ SIG members at quarterly regional quality meetings & annual national RTQ SIG meeting. Project group members will be able to bench sharing findings, identify improvement needs at local & national level which is not possible with current NCPES results & generic FFT.

CURIE PRD is designed for large scale implementation & content will be adapted as we gain insight in what works and what is not. However, even in its initial form it will deliver the largest multi-centre multi-cancer PR dataset in the UK. We will use CURIE to understand what PRD currently is, how it varies between groups & use incrementally to improve outcomes & experience.

Learning is applicable to wide range of conditions & can easily be adapted by other disciplines & Q members.

 

 

How you can contribute

  • Review our idea, help us refine and improve it;
  • Ask us questions if anything that is not clear to you, no question is too silly;
  • Challenge our idea and methodology so we can take advantage of the collective wisdom of Q members; Share with us if you have similar experience / ideas in patient reported data;
  • Explore potential opportunities for collaboration, pull efforts together to help providers to improve oncology service;
  • Connect us to other groups / organisations if they may have similar interest in patient reported data;
  • Be our critical friends, help us think, connect and work across professional boundaries for benefits of cancer patients / carers,
  • Share your thought if you think it is relevant to the success of this project;
  • Like our idea, join us if you want to be involved;
  • You can also contact us using our project group mailing list RTQSIGPREM@jiscmail.ac.uk to share your thoughts.

Plan timeline

11 Jun 2019 Quarterly progress report at regional quality meetings
30 Jun 2019 Submit idea on Q exchange
29 Jul 2019 Submit detailed proposal and refine idea based on feedback
1 Sep 2019 Co-develop&agree CURIE PRD promotional materials&questions
10 Sep 2019 Quarterly progress report at regional quality meetings
20 Sep 2019 Q exchange shortlist announced
30 Sep 2019 3rd Project group meeting & finalise CURIE QI documents
21 Oct 2019 Q exchange campaign if CURIE PRD is shortlisted
31 Oct 2019 Build prototype, users feedback in design-build-test cycles
13 Nov 2019 Q exchange winners announced at Q community event
30 Nov 2019 Participating departments identify local CURIE PRD champions
10 Dec 2019 Quarterly progress report at regional quality meetings
31 Dec 2019 Set local service level agreement, consent, info governance
13 Jan 2020 CURIE PRD implementation in participating departments
15 Mar 2020 CURIE PRD development update at RTQ SIG annual meeting
16 Jun 2020 Quarterly progress report at regional quality meetings
15 Sep 2020 Quarterly progress report at regional quality meetings
30 Sep 2020 4th Project group meeting,ongoing review,adaptation &sharing
16 Mar 2021 CURIE PRD development update at annual RTQ SIG meeting
16 Mar 2021 Share implementation experience & benchsharing 1-year result

Comments

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

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

    1. 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. 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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