Digital tools for detecting steroid side-effects
- Shortlisted idea
Meet the team
- Lorna Neill, patient partner
- Margaret Grover, patient partner
- Andrew Barr, Rheumatologist
- Andy Webster, CCIO
- Jimmy Parvin, Kaizen Specialist
- Eleanor Snowden, Cynefin Centre
- Amy Rebane, PPIE Manager
- Hanif Ismail, PPIE Manager
- George Crowther, Liaison Pyschiatrist
- Mohua Siddique, Leeds Innovation Pop-Up
- Jean Scopes, Rheumatology Specialist Nurse
- Jo Robson, Rheumatologist
What is the challenge your project is going to address and how does it connect to the theme?
Corticosteroid (“steroid”) side-effects include hypertension, hyperglycaemia or mood disturbance. But patients don’t always know what side-effects to report, or how to do so. Scheduled face-to-face/telephone consultations are too infrequent to avert presentation to acute care. This is a patient safety issue for outpatients treated with high-dose/long-term steroids. In our patient involvement project, “doing something about the nasty effects of steroids” emerged as important and potentially feasible.
We have the technology for digital remote monitoring via eForms sent via SMS. We are now introducing this for disease-based PROMs in rheumatology. Drug monitoring presents extra challenges because of the diversity of possible side-effects and potential need for prompt action.
Older patients have higher rates of multimorbidity and digital exclusion. We will ensure that multi-stakeholder involvement is “baked in” to the project to ensure that eForms data results in appropriate action/advice for patients, including supported self-management if appropriate.
What does your project aim to achieve?
1. We will co-design a large-scale, anonymous, multi-stakeholder SenseMaker® micro-narrative survey about managing steroid side-effects (online or pen-and-paper).
2. Based on survey findings, medical students will have protected time to work with experienced clinicians to generate hypotheses to be implemented in multiple small, iterative QI projects (“tests of change”), including eForms (new Steroid Impact PROM) and non-digital “workarounds” for at-home monitoring. Our initial use-case is the first two weeks of steroids for giant cell arteritis.
3. We will build a clinical pathway for defining and safely responding to “red flag” data-points signifying patients at risk of deterioration, and iteratively update thresholds by matching collected data to clinical outcomes.
4. Process, outcome and balancing measures will be assessed using the Leeds Improvement Method, with iterative improvement via PDSA cycles, with qualitative staff/patient/carer feedback.
5. Micro-narratives will also be used to design scenarios that can be used in teaching sessions for patients, medical students or clinicians.
How will the project be delivered?
Using digital multi-stakeholder involvement, we take a complexity-informed improvement approach, using existing digital tools in a new way.
Each of us (backgrounds: digital, improvement, clinical) has already worked with at least one other team member on previous projects, including patient involvement, digital eForms, and GCA pathway work (shortlisted for a British Society for Rheumatology Best Practice Award).
1. Process measures will include: uptake of eForm in clinic; uptake of eForm at home; patient-initiated and clinician-initiated actions in response to side-effects; extra time needed in clinic to “train” patients; reduction in “drug monitoring” follow-up appointments; quality of data collected
2. Clinical outcome measures will include: time to detection of steroid side-effects; serious steroid-related adverse events including need for acute care.
3. Balancing measures will include: measures of over-detection; patient anxiety; burdensomeness (staff/patient); overuse of enquiry line or GP consultations; cost.
4. Staff and patient satisfaction
5. Qualitative evaluations eg “go-along interviews” with patients in real time.
How is your project going to share learning?
· We will involve Q members via the survey and engage via a Q SIG, blogs and Twitter. We will involve patients in co-designing the survey and we will ask relevant patient charities (PMRGCAuk, VasculitisUK) to disseminate the survey link. Our recent digital patient involvement project (PMR Voices 2021) received 299 responses in 3 weeks; many participants offered to work with us on making change happen.
· Learning from our QI projects (creating safe pathways to ensure patient-entered data translates to appropriate action) will inform our Trust’s planned scale-up of eForms including: patient cohorting, automation, bulk reporting, and customizability.
· We will document the building-blocks of what we do so others can adapt to their setting; we will hold a final multi-stakeholder workshop to inform a final report.
· The micro-narratives will generate educational resources for patients, medical students and clinicians. This will help them learn about detecting and acting on steroid side-effects.
How you can contribute
- Disseminating the survey: in the survey we are interested in the perspectives of patients and their families or carers (so links to relevant patient organisations, support groups and charities would be particularly helpful - asthma and IBD as examples but there are many more); and also in the perspective of healthcare professionals (we particularly want to reach out to non-medics: nurses, pharmacists, dieticians).
- Expertise from past experience of similar projects
- Expertise of managing steroid side effects - professionally and/or lived personal experience
- Expertise in high-risk drug monitoring in outpatients
- Expertise in patient involvement and co-production
- Digital inclusion, especially in older people
- Primary-secondary care collaboration
|1 Jun 2022||Survey design|
|10 Jul 2022||Survey dissemination|
|1 Sep 2022||Analyse survey for educational resource|
|1 Sep 2022||Survey analysis for QI projects|
|3 Apr 2023||Workshop on transferable learning|