Programme Title: eRAPID Towards safer delivery and monitoring of cancer treatments. Electronic patient self-Reporting of Adverse-events (AE): Patient Information and aDvice

Programme start and end dates: January 2013 – March 2019

This project was funded by the National Institute for Health Research (NIHR) Research Programme Grant for Applied Research (RP-PG-0611-20008).

Final report submitted: September 2019 (currently undergoing editorial review)

Aims and Objectives

eRAPID was a 5 year multi-centre research programme funded by the National Institute for Health Research (NIHR). The research was carried out in three hospital sites; Leeds, Bristol and Manchester. During the programme a new online system to improve the monitoring and management of symptoms and side effects related to cancer treatment (chemotherapy, radiotherapy and surgery) was be evaluated. The online reports are immediately displayed in the patient hospital electronic records, so clinicians used them to improve and streamline patient care. This is a truly unique feature of the eRAPID system. The aim of eRAPID was to improve the safe delivery of cancer treatment, enhance the patient experience and care and to standardise documentation of symptoms and side effects of treatments.

Background and rationale

Over 250,000 patients in the UK are diagnosed with cancer each year. All cancer treatments have acute and long-term Adverse Effects. An estimated 1.8 million people are living with and beyond cancer. Improving AE reporting/ documentation during and after cancer treatment can improve patient care through earlier detection/timely management of AE, directing patients to appropriate services for late-radiotherapy effects and supporting patients post-discharge after cancer surgery. However, a feasible, cost-effective and sustainable model is required. Information technology offers potential solutions for remote-monitoring, but there is a need for applied research to develop and evaluate such approach.

Research plan

The programme of work will develop and test the eRAPID intervention in:

  • systemic treatment (chemotherapy and targeted therapies)
  • radiotherapy for pelvic malignancies
  • surgery for upper gastro-intestinal cancer

The programme was organised into 5 work-packages (WP) applied across the clinical areas. Work-packages 1 to 3 comprise the development of eRAPID intervention.

WP1 Electronic platform. Implement a secure flexible electronic platform for patients to report AE from clinic and home, with real-time AE documentation in Electronic-Patient-Records.

WP2 Patients: AE items and advice. Develop patient-reported AE items, with defined severity grades and evidence-based patient advice and alerts.

WP3 Professionals and care pathways. Understand and map the current patient pathways aiming to integrate eRAPID and identify key professionals to be trained in its delivery.

On completion of the above, the eRAPID intervention model was developed, ready for testing.

WP4 Feasibility and pilot studies. Pilot eRAPID assessing patient /clinician feasibility and acceptability.

WP5 Large Scale Evaluation: Undertake a randomised controlled trial to establish clinical and cost-effectiveness of eRAPID in Systemic-Treatment.

The Research Team

The programme brough together senior researchers, clinicians and patients with expertise and strong track records in cancer care, patient-centred research (development/validation of Patient-Reported-Outcome-Measures), health informatics, applications of IT for patient self-reporting, clinical trials methodology, health economics, qualitative methods and implementing interventions.

Leeds, Bristol and Manchester offer an internationally recognised environment for conducting applied health-services and clinical research.  We have received excellent support from clinical leads in the 3 centres, from the Yorkshire Cancer Research Network and the West Yorkshire Comprehensive Local Research Network.

Lead applicant: Galina Velikova (Medical Oncology and Patient-Reported Outcomes, Leeds)

Final programme report co-authors
  1. Kate Absolom (Patient-Reported Outcomes, Leeds)
  2. Jenny Hewison (Health Services Research, Leeds)
  3. Trish Holch (Patient-Reported Outcomes, Leeds)
  4. Lorraine Warrington (Patient-Reported Outcomes, Leeds)
  5. Kerry Avery (Patient-Reported Outcomes, Bristol)
  6. Hollie Richards (Patient-Reported Outcomes, Bristol)
  7. Jane Blazeby (Surgical Oncology, Bristol)
  8. Bryony Dawkins (Health Economics, Leeds)
  9. Claire Hulme (Health Economics, Exeter)
  10. Robert Carter (IT Manager, Leeds)
  11. Liz Glidewell (Health Sciences, York)
  12. Ann Henry (Clinical Oncology&Radiotherapy, Leeds)
  13. Kevin Franks (Clinical Oncology&Radiotherapy, Leeds)
  14. Geoff Hall (Medical Oncology, Cancer Lead Clinician and IT, Leeds)
  15. Susan Davidson (Clinical Oncology, Manchester)
  16. Karen Henry (Lead Cancer Nurse, Leeds)
  17. Carolyn Morris (Patient representative)
  18. Mark Conner (Psychologist, Leeds)
  19. Lucy McParland (Clinical Trials, Leeds)
  20. Katrina Walker (Clinical Trials, Leeds)
  21. Eleanor Hudson (Clinical Trials, Leeds)
  22. Julia Brown (Clinical Trials, Leeds

Steering Group members

  1. David Cameron
  2. Janet Dunn
  3. Sara Faithful
  4. Barbara Woroncow
  5. Virginia Cucchi
  6. Penny Wright
  7. Carmel Anandadas
  8. Jane Blazeby
  9. Hollie Richards
  10. Kerry Avery
  11. Julia Brown
  12. Eleanor Hudson
  13. Katrina Walker
  14. Lucy McParland
  15. Galina Velikova
  16. Kate Absolom
  17. Sarah Dickinson
  18. Rose Peacock
  19. Simon Pini
  20. Michelle Edye

DMEC Group members

  1. Dawn Teare
  2. Karen Turner
  3. Peter Barrett-Lee
  4. Janet Dunn
  5. David Cameron
  6. Julia Brown
  7. Galina Velikova
  8. Kate Absolom
  9. Sarah Dickinson
  10. Michelle Edye

Publications and Outputs

Professor Galina Velikova was very pleased to present the results of the eRAPID systemic workstream at the ASCO conference on 29th May 2020. This was delivered virtually via the Video Journal of Oncology. If you are also interested in reading about the study, you can read the abstract here.

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Absolom K, Gibson A, Velikova G. Engaging Patients and Clinicians in Online Reporting of Adverse Effects During Chemotherapy for Cancer: The eRAPID System (Electronic Patient Self-Reporting of Adverse Events: Patient Information and aDvice). Med Care. 2019 May, 57, S59 -65. https://doi.org/10.1097/MLR.0000000000001085

Holch P, Pini S, Henry A, Davidson S, Routledge J, Brown J, et al. eRAPID Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice: A pilot study protocol in pelvic radiotherapy. Pilot and Feasibility Studies 2018;4:1-15. URL: https://doi.org/10.1186/s40814-018-0304-6

Holch P, Warrington L, Potrata B, Ziegler L, Hector C, Keding A, et al. Asking the right questions to get the right answers: using cognitive interviews to review the acceptability, comprehension and clinical meaningfulness of patient self-report adverse event items in oncology patients. Acta Oncol 2016;55:1220-6. URL: https://doi.org/10.1080/0284186X.2016.1213878

Avery KNL, Richards HS, Portal A, Reed T, Harding R, Carter R, et al. Developing a real-time electronic symptom monitoring system for patients after discharge following cancer-related surgery. BMC Cancer 2019;19:463. URL: https://doi.org/10.1186/s12885-019-5657-6

Absolom K, Holch P, Warrington L, Samy F, Hulme C, Hewison J, et al. Electronic patient self-Reporting of Adverse-events: Patient Information and aDvice (eRAPID): a randomised controlled trial in systemic cancer treatment. BMC Cancer 2017;17:318.URL: https://doi.org/10.1186/s12885-017-3303-8. https://bmccancer.biomedcentral.com/articles/10.1186/s12885-017-3303-8

Warrington L, Absolom K, Holch P, Gibson A, Clayton B, Velikova G. Online tool for monitoring adverse events in patients with cancer during treatment (eRAPID): field testing in a clinical setting. BMJ Open 2019;9:e025185. URL: https://doi.org/10.1136/bmjopen-2018-025185

Holch P, Warrington L, Bamforth LCA, Keding A, Ziegler LE, Absolom K, et al. Development of an integrated electronic platform for patient self-report and management of adverse events during cancer treatment. Annals of Oncology 2017;28:2305-11. URL: https://doi.org/10.1093/annonc/mdx317

Warrington L, Absolom K, Conner M, Kellar I, Clayton B, Ayres M, et al. Electronic Systems for Patients to Report and Manage Side Effects of Cancer Treatment: Systematic Review. J Med Internet Res 2019;21:e10875. URL: https://doi.org/10.2196/10875

Absolom K, Gibson A, Velikova G. Engaging Patients and Clinicians in Online Reporting of Adverse Effects During Chemotherapy for Cancer The eRAPID System (Electronic Patient Self-Reporting of Adverse Events: Patient Information and aDvice). Medical Care 2019;57:S59-S65. https://doi.org/10.1097/Mlr.0000000000001085

Holch P, Henry AM, Davidson S, Gilbert A, Routledge J, Shearsmith L, et al. Acute and Late Adverse Events Associated With Radical Radiation Therapy Prostate Cancer Treatment: A Systematic Review of Clinician and Patient Toxicity Reporting in Randomized Controlled Trials. Int J Radiat Oncol Biol Phys 2017;97:495-510. http://dx.doi.org/10.1016/j.ijrobp.2016.11.008.

Lindner OC, Velikova G, Stark DP. Digitally enabled patient-reported outcome measures in cancer care. Lancet Oncology 2019;20:E2. https://doi.org/10.1016/S1470-2045(18)30894-5

Warrington L, Holch P, Kenyon L, Hector C, Kozlowska K, Kenny AM, et al. An audit of acute oncology services: patient experiences of admission procedures and staff utilisation of a new telephone triage system. Support Care Cancer 2016;24:5041-8. https://doi.org/10.1007/s00520-016-3370-4

Warrington L, Absolom K, Velikova G. Integrated care pathways for cancer survivors – a role for patient-reported outcome measures and health informatics. Acta Oncol 2015:1-9. http://www.ncbi.nlm.nih.gov/pubmed/25751758.

Public Launch Presentation 4th February 2013

Members of PCOR with Julian Hartley, Leeds Teaching Hospitals Chief Executive