Case study: Prehabilitation pilot using REDCap

Overview

Lung cancer is the leading cause of cancer-related mortality in the UK. Many people are already experiencing significant health challenges by the time a diagnosis is confirmed, which can limit treatment options and affect tolerance of anticancer therapies.

Although treatments such as immunotherapy and targeted therapies are increasingly available, only around half of people diagnosed with lung cancer in England go on to receive active treatment. Understanding whether supportive care can be introduced earlier in the diagnostic pathway is an area of ongoing interest.

Prehabilitation involves supportive interventions such as nutritional, physical and palliative care delivered alongside cancer treatment. In some settings, prehabilitation has been shown to reduce hospital stays and improve surgical outcomes. However, there is limited evidence about its use for people with suspected or advanced lung cancer, particularly when delivered prior to diagnosis.

This pilot project explored whether prehabilitation could be delivered earlier in the lung cancer care pathway, alongside diagnostic investigations, and examined how structured data collection could support evaluation of this approach.

The project was led by Edinburgh Cancer Informatics and funded jointly by NHS Lothian and Merck Sharp and Dohme (MSD).

What did the project involve?

Between June 2021 and August 2022, 50 patients undergoing investigation for suspected lung cancer received prehabilitation interventions.

Patients were offered early assessment from a multidisciplinary team including a palliative medicine specialist, registered nutritionist and physical therapist. The aim was to provide supportive care earlier in the patient journey while diagnostic investigations were still underway.

Clinical data were recorded using REDCap, a secure digital data capture system widely used in clinical research. Healthcare professionals entered information on diagnoses, treatments and outcomes, enabling consistent data collection to support analysis of the pilot programme.

NHS Lothian registered and approved the EPIC pilot as a quality improvement initiative. The interventions involved services that were already available within the cancer centre but had not previously been delivered together as a structured prehabilitation programme.

The pilot formed the first year of a two-year project. A formal oversight committee was established to oversee delivery. Four outcome measures were identified to support evaluation:

changes in patient weight
rates of active treatment
hospital admissions
overall survival

Consultation notes were also reviewed using a thematic analysis framework to understand patient experiences.

Governance and data access

Access to healthcare data for the project was facilitated through DataLoch.

Requests for data access were submitted through DataLoch’s governance processes. DataLoch supports the submission of applications and facilitates the review pathway, which includes Caldicott review where required.

After approval through the appropriate governance pathway, DataLoch provided a route to relevant hospital and GP records to enhance the data available within the cancer databases. Staff from DataLoch and Edinburgh Cancer Informatics carried out disclosure checks on outputs such as tables and graphs prior to publication.

Further information about DataLoch’s cancer research services can be found here.

What were the challenges?

There is no single agreed definition of prehabilitation, and approaches can vary depending on cancer type, disease stage and individual patient needs

Initial feedback suggested that receiving several interventions within a single appointment could feel overwhelming for some patients. In response, the structure of appointments was adjusted to improve engagement and ensure that patients could benefit from each component of the programme.

While the pilot demonstrated that early prehabilitation could be delivered alongside diagnostic investigations, further work would be required to better understand longer-term outcomes such as hospital admissions and survival.

What has been learned so far?

Eighty-four percent of patients who agreed to take part attended all three prehabilitation assessments.

The pilot demonstrated that early prehabilitation can be delivered during the diagnostic phase for patients with suspected advanced lung cancer.

The project also showed how structured digital data capture using secure systems such as REDCap can support the evaluation of new care models. Collecting consistent clinical data alongside routine care allows researchers to assess patient outcomes and inform the design of future studies.