From Bench to Bedside: Clinical practice examples
Example 4: University Hospitals Sussex NHS Foundation Trust (UHS), United Kingdom - outpatient
Background
The University Hospitals Sussex NHS Foundation Trust (UHS) is a merger of 7 hospitals in Brighton and Hove, parts of East Sussex and West Sussex. In 2020 the NHS first-time implemented a web-platform for remote, long-term collection and real-time analysis of PROMs in cancer care.
Tailored interaction and patient-centered care: Routine PRO assessment before appointments was introduced to better tailor clinician–patient interactions and support holistic, patient-centred care (e.g., prompting discussion of psychological well-being). PROM completion helps patients reflect on symptoms and visualise trends over time, providing clinicians with richer information for shared decision-making (a NICE priority). Integrating PROs into routine care has been linked to improved quality of life and survival by enabling earlier issue detection and targeted interventions, helping patients better tolerate systemic therapy and potentially lowering healthcare costs1.
Component of a larger concept: In September 2020, University Hospitals Sussex NHS Foundation Trust implemented an Enhanced Supportive Care (ESC) model to provide earlier supportive/palliative care for patients who may benefit, supported by a new acute-ward team. As part of ESC, patients were offered the My Clinical Outcomes (MCO) web-app for remote, regular PRO collection with real-time access for the clinical team. Expected benefits included fewer readmissions (30-day and non-elective), fewer critical care days, and shorter hospital stays.
Patient groups: Patients with all cancer types are included in the PRO assessment.
Included PROMs:
- EORTC QLQ-C30:30-item cancer-specific HRQoL questionnaire (physical, financial, social, cognitive, emotional impacts)2
- EQ-5D-3L and EQ-5D VAS: 5 items (mobility-care, usual activities, pain/discomfort, anxiety/depression) plus a visual analogue scale3
Rationale: No routine PRO monitoring existed before the project. Instruments were chosen because they are well-established QoL measures, usable across all tumour types and independent of treatment type/stage.
Platform & workflow: The ePRO platform, My Clinical Outcomes (MCO) was configured to prompt patients by email to complete three PROs assessments routinely every 2 weeks (more often if clinicians/patients wanted). Results and progress were made available in real time to the clinical team and also viewable by patients to track their own outcomes.
Professor Richard Simcock, Consultant Breast Oncologist and Chief Medical Officer of Macmillan has described how he has integrated the use of the solution into his practice: “The challenges are enormous - there are not enough people and not enough money. We have a good problem in cancer, which is that we have lots of patients on long-term therapies; but the challenge of monitoring these patients safely has been almost insurmountable for our service. We’re leveraging the staffing as much as possible but we need other ways to safely monitor treatment… My Clinical Outcomes is one of the ways that we’ve chosen to do that.”
UHSx CNS Rob Herriott said: “Today I saw a patient who we've introduced to MCO too and he gets to the point where he's having some bleeding giving him symptomatic anaemia, and he presents acutely. But we can get him into a clinic for haemoglobin check, and potentially a blood transfusion afterwards on a regular basis, rather than a big long 4-5 day stay in hospital with his terminal cancer. We've now signed him up for MCO as well, so he can report symptoms himself as well. So, it's just using different ways of trying to monitor.”
Other barriers/faciltiators: TMCO was an additional system, so adoption depended on motivated clinicians. Uptake varied from early adopters to resistant users, as in most organisations. We have no specific ideas of how to improve, except ongoing support and promotion at all levels and seamless administration/workflows.
Acess: All clinicians involved in patient care (oncologists, CNS/nurse specialists, palliative care) had real-time access to PRO data via individual MCO logins.
Interpretation approach: Low or deteriorating overall scores were flagged for review, and the system allowed teams to segment/sort patient lists, analyse trends for individuals and cohorts, and review item-level responses. For proactive follow-up, the team used a pragmatic trigger: a ≥10% change in scores prompted patient contact within 2 working days. They usually started with email (often preferred and reassuring), with telephone follow-up as needed.
Easy handling: The dashboard was configured to keep interpretation simple and the interface highly usable and accessible, aligned with current accessibility guidance.
Role of disclaimers: To manage expectations, disclaimers were included in automated emails and on the patient dashboard:
- participation is voluntary
- patients should not assume timely review of submissions
- for acute concerns, patients should contact their team via usual channels rather than relying on the platform
Stepped communication approach: If a PRO score changes by more than 10%, the team initiates contact with the patient - first via a nurse. If the issue cannot be resolved, it is escalated to a physician.
Motivated clinicians discuss patients’ PRO data routinely. This would be our aim to close the loop.
Dr David Bloomfield, Consultant Oncologist and Chairman of the Sussex Cancer Fund said: “By providing a user-friendly, web-based platform, patients are more likely to accurately record how they are feeling – information that doctors can see instantly so they can decide whether they need to check in on a patient. It also means doctors can analyse patient data to assist with treatment and see if therapies are having a benefit. What is more, it provides system level data – for example an analysis showed one of the most significant concerns was fatigue, indicating the need for new targeted support for patients.”
Ideally, PRO data are used to structure symptom discussions with patients.
Depending on need, follow-up actions include:
- Support and guidance (for most patients)
- Referral to specialists (when indicated)
- Additional clinical review such as checking blood results or prompting scans
- Appointments with the supportive oncology team
- Medication changes, including adaptation of systemic anti-cancer therapy (SACT) when appropriate
Patients could log into their personal MCO dashboard to view QoL trends over time and request extra assessments. Predefined responses triggered an alert advising contact with the 24-hour cancer treatment helpline.
- Project videos, interviews and other resources: https://www.myclinicaloutcomes.com/case-study/uhs
- Background to use of MCO in UK NHS cancer care: https://www.myclinicaloutcomes.com/oncology
- Fix IT 2023 prize winner at Royal College of Physicians: https://medicalcare.rcp.ac.uk/content-items/case-study/fix-it-prize-winner-2023-my-clinical-outcomes-mco/
1Basch E, Deal AM, Dueck AC, Scher HI, Kris MG, Hudis C, Schrag D. Overall Survival Results of a Trial Assessing Patient-Reported Outcomes for Symptom Monitoring During Routine Cancer Treatment. JAMA. 2017 Jul 11;318(2):197-198. doi: 10.1001/jama.2017.7156. PMID: 28586821; PMCID: PMC5817466.
2Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A,Flechtner H, Fleishman SB, de Haes JCJM, Kaasa S, Klee MC, Osoba D, Razavi D,Rofe PB, Schraub S, Sneeuw KCA, Sullivan M, Takeda F.The European Organisation for Research and Treatment of Cancer QLQ-C30: Aquality-of-life instrument for use in international clinical trials in oncology. Journal of the National Cancer Institute1993;85:365-376.
3Rabin R, de Charro F. EQ-5D: a measure of health status from the EuroQol Group. Ann Med. 2001 Jul;33(5):337-43. doi: 10.3109/07853890109002087. PMID: 11491192.
4A. Macnair,A. Sharkey,K. Le Calvez,R. Walters,L. Smith,A. Nelson,J. Staffurth,M. Williams,D. Bloomfield,J. Maher. The Trigger Project: The Challenge of Introducing Electronic Patient-Reported Outcome Measures Into a Radiotherapy Service. Clinical Oncology. September 2019.