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Digital tools for detecting steroid side-effects

Steroids cause many side-effects. But monitoring for side-effects requires improvement. We need to better understand the patient perspective in order to design digital solutions for early detection.

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  • Shortlisted idea
  • 2022

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

Plan timeline

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


  1. Hi Sarah and team

    Congratulations on getting shortlisted. Now the hard work begins!

    Thanks Sarah for your feedback on the comments I'd made. Really great that you will engage with GPs during the pilot stage and in the balancer metrics. I suppose if I were to push you a little further I might ask whether GPs will be involved even earlier, in project design? Their perspective on the design of the survey, other aspects of the project, and potential implications for primary care are likely to be very valuable and may differ from those important to us in secondary/tertiary care.

    Best of luck!


    1. Hi Charlotte, that is a really useful comment, thank you!

      We'd definitely value input into the survey design from people who work in the community/primary care. (and particularly Q members of course!)

      Also, as we put together the team to plan the online survey, we will do a "who's missing from the [virtual] room?" exercise, so that we can specifically reach out to groups - including GPs - who might provide additional useful perspectives.


  2. Hi,

    Fantastic sounding project. You could share with Crohns and Colitis UK and IBD nurses as the IBD patient group would undoubtedly be worth engaging with.

    From a dietetic perspective, weight gain and potential management whilst on steroids needs further thought. Adolescent IBD patients in particular can get extremely distressed and start disordered eating in response. A classic/generic response from healthcare professionals in response to steroid induced weight gain is to eat healthier but from a patient perspective, this may cause additional distress.

    I took a large quantity of IV/high dose steroids in my 20s and experienced ALL the side effects! Happy to support from a lived experience as well as healthcare professional who has had the chance to reflect on the experiences.

    Good luck!


    1. Thank you Rebecca! this is very useful indeed. If this project gets selected we'd very much value your expertise. How do we talk to patients about weight/size/diet without inadvertently triggering distress? This is not easy but hugely important: both your lived experience + your professional viewpoint would be very welcome.

  3. Guest

    Andrew Webster 3 months, 1 week ago

    Great feedback, hopefully this gets supported as a proof of concept for a wide ranging functionality that could make a significant difference to how we manage pateients follow up in the future.

  4. Guest

    Charlotte Sharp 3 months, 3 weeks ago

    Congratulations on having such a great team to address this really important clinical problem of identifying and managing side effects from steroid prescription.

    It seems from the proposal that this focuses on short-term side effects from high dose steroids such as those used in GCA, but that is not so explicit - I note the initial use case, but scenarios will you use after that? Will you also include longer-term low-dose steroids? Could consider keeping it bounded to the former for the initial part of the project and then using longer-term/lower dose as a way of testing scale up? That way you could collect intel on how to scale up to other specialities also.

    How will primary care colleagues be involved? They are often left dealing with the consequences of high dose steroids prescribed in secondary care e.g. hypertension/hyperglycaemia. Do you have any plans to engage them during project design? How will you capture if increased patient awareness +/- anxiety triggers additional consultations in primary care?

    Great to see the emphasis on patient self management, but sometimes this may be seen by patients as us shifting responsibility and adding to patient burden by making them do more and more work. Perhaps that could be captured in some of the patient satisfaction work?

    Good luck with the next stage! Happy to support in any way and to disseminate via the BSR QI SIG

    1. Dear Charlotte,

      Thank you for the feedback and suggestions!

      1. Yes: in testing we will start with high-dose steroids for GCA. We will seek learning from this before extending to the more common scenario of long-term, low-dose steroids in rheumatology - we anticipate that there will be different considerations for different prescribing patterns. Our online survey of patients and healthcare professionals will cover both scenarios and this will inform what we'll need to consider before scaling.

      2. Primary care input will be crucial - GPs will be an important group we want to reach in our survey and their views will inform our "balancer" metrics we measure in the QI phase - measures of over-detection will appear not just in secondary care data but also in primary care (we are fortunate in Leeds in that our Trust shares some data with local GP practices, so it may even be possible for us to capture data on additional primary care consultations without putting extra data-collection work onto the GPs). Reflecting on your comment further I think that communication with primary care during the pilot will be essential; we will build clear and timely communication with patients' GPs into our testing.

      3. We hope that the intervention would make patients feel safe and supported, and help us pick up those who are struggling, but it's possible that it might add extra stress by adding to the burden of "work" they feel they have to do. We would definitely need to cover this in our evaluation in the qualitative feedback - so we should try and assess patient burdensomeness as well as health anxiety. We also need to design to minimise patient burden: the eForm needs to have short, clear questions without imposing too much cognitive burden on the patients filling them out (eg a Likert scale of 1-5 may be easier for patients to complete than the conventional 1-10 we often default to in rheumatology).

  5. Hello, what I would be interested in, is to hear any of your thoughts on either existing learning you can draw from similar examples anywhere in the world for other meds or conditions, or indeed, how you think you can disseminate your findings to be translatable to other meds or condition groups.

    You see, I am approaching this from that generalist angle vs the specialist focus, the latter being where a lot of great work tends to happen by specialist Drs and charities (and pharma) catering for specific patient groups. But, you end up with each such valid programme delivering a great solution in a narrow setting that works for the specific patient groups, but not easy to then generalise or incorporate alongside many other such solutions... So, at the end of the project, do put some time aside to consider and share the bits of this work, be it the process alone even, that can be used more widely.

    1. Thank you Sarah for your considered response, and glad my generalist points have been considered. firstly to explain how steroid side effects impact a lot of different patient groups and condition treatments, so your work is widely applicable, but also how to therefore position your work to a wide enough arena to ultimately make as much impact more widely in terms of the methodology.

      Looking forward to seeing how it progresses.

    2. Hi Dimitri! Great comment!

      Giant cell arteritis is one where there is a clear unmet need (it says in the NICE guidelines we should be monitoring steroid side-effects!), yet it's also one of the most challenging groups (high steroid doses, frailty and multimorbidity). Our collaborator Eleanor Snowden has previously worked on side-effects of contraceptive drugs; she brings that background to our project. Similarly, the perspective of the non-rheumatologist clinicians on the team (elderly care medicine, emergency medicine) and their networks (oncology and others) will be invaluable in helping us understand what factors are specific to our patient group and which are relevant elsewhere. We'd also be really interested in hearing from any Q members that been involved with / are aware of other work along similar lines.

      In terms of applicability our work is very much in the direction of travel in the NHS Long Term Plan - the "shift to the left" in care (from inpatient to outpatient, from outpatient to primary care, and from primary care to self-management). The question is how information should flow in order to make that "left shift" safe; digital is one proposed solution but not without potential pitfalls. We see our use case as a "proof of concept" - a tractable question - rather than an end in itself.

      We totally agree that we don't want to over-design for a "niche" indication. We have planned to address this in two ways.

      Firstly, relevance to different patient groups.

      Steroids are prescribed across almost all specialities for a multitude of conditions. In rheumatology, there is giant cell arteritis (GCA), polymyalgia rheumatica (PMR), lupus and rheumatoid arthritis. Examples outside rheumatology include respiratory (asthma, COPD, sarcoidosis); gastroenterology (inflammatory bowel disease); and dermatology (pemphigoid and many others).

      We wanted the initial large-scale survey to go out to patients and healthcare professionals not just in rheumatology but across all these different areas of medicine - hence, the network of Q members will be incredibly helpful to spread the link through their networks. This is where the Sensemaker software, designed to cope with hundreds or thousands of responses, comes into its own: it's easy to ask people what condition (or speciality group of conditions) they take steroids for; the interface then allows us to "filter" the responses according to the response to that question, so that we can quickly visualise differences between the different patient groups. This will give us an idea about the extent to which experiences are common or different across conditions. Similarly we can ask them what country they live in, their age, gender, or other variables of interest - particularly relating to health inequalities. The patterns of responses we see will be very informative.

      Secondly, elements of the solution.

      Looking through a complexity lens, as well as from our own experience of improvement projects, we know that innovations developed in one context can't usually be "cut and pasted" into other contexts without adaptation. So we view our project as generating a set of building-blocks that could be disassembled and then recombined in different ways by people working in other contexts. Again this is where the Q community will help with their multiple perspectives.

      I think it is a great idea to set some time at the end of the project to consider the "translatability", perhaps an online workshop with Q members, patients and others? Thank you for this suggestion! I will add this in to the timeline.

  6. Hi Sarah and Alison,

    This sounds like a really promising idea. There could be some really useful learning from this project, particularly about what you learn about co-designing a digital monitoring solution for people with multimorbidities that improves personalised care.

    A couple of questions I had on reading it, that may be worth considering for the final proposal.

    - you mention it is an elderly population with high rates of multimorbidity and digital exclusion. How will you ensure you engage them meaningfully in the co-design of the survey and tests of change? Do you have existing relationships and expertise to enable this? If not, is this factored in to your project timelines? There is a lot of good evidence out there on digital inclusion with older age groups (e.g. from the Centre for Ageing Better) if this isn't something you already have experience with.

    - You mentioned you are drawing on existing technology and pilots within the organisation. What learning from this work do you want to pay particular attention to in your testing for this service and pathway?

    - You mentioned about bringing together clinical, digital, involvement and improvement specialists. Are these established relationships in the organisation? Earlier in the proposal you only mention the role of clinical leads and medical students.

    It sounds like a promising idea, with lots of interesting learning I'd be interested in following.

    Good luck!


    1. Dear Kevin,

      Thank you for your thoughtful response. We definitely want to include carers/family amongst the stakeholders and we appreciate your offer to share the survey within your geographical area.

      As for health inequities, as regards steroid side-effects, we are particularly concerned about access to care and everything that links in with that. For our previous patient involvement project, PMR Voices 2021, we spent some time discussing this with the patients who co-designed this with us. As with other medical conditions there is a complex interaction between multiple factors including transport, income, heath literacy, ethnicity, age, isolation, visual/other sensory challenges, mobility, multimorbidity and many others. Eventually we settled on asking the single question "is it easy for you to get to hospital appointments?". Those that found it easy to get to hospital appointments reported more positive experiences of their condition compared to those who said "it's okay" or "it's hard".

      Of course, those who find it harder to get to hospital appointments may also stand to benefit the most from remote monitoring, provided it can be made to work for them.

      We'd like to hear from Q members about how they have handled similar challenges.

    2. Hi Sarah and Alison,

      With the elderly and comorbidities family/carers are a very useful source of support for both the patient and the medical team.  Carer support groups/charities would be a good place to share the survey.

      With these specific conditions are there any specific underserved communities that may be difficult to access - health inequities?

      I can share the survey within Hertfordshire/East of England.


      Kevin Minier

    3. Thank you for the feedback! This is super helpful. Have edited a little to show how it builds on previous work.

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