WelLPRES Cancer Recovery Programme (United Kingdom)

Challenge

There is a real need to address the delivery of service fragmentation across the healthcare system, regionally and nationally.  The challenge around fragmentation focuses primarily on the lack of coordination of care between clinical teams, which often results in patients experiencing discontinuity of care or disparity in care, despite the best efforts from the dedicated clinical teams.

The NHS Long Term Plan states the requirement to implement Personalised Stratified Follow up (PSFU) pathways for Breast, Colorectal and Prostate cancer survivors by 2020/21.

Aim

The aim of Lancashire and South Cumbria Integrated Care System (ICS) is to digitalise the analogue approach in 5-year recovery programmes in four regional NHS Trusts – University Hospitals of Morecambe Bay, Lancashire Teaching Hospitals, East Lancashire Hospitals and Blackpool Teaching Hospitals, to optimise the process for better cancer services across the entire recovery programme and help all involved in the process with reliable and user-friendly applications to follow each patient’s journey in the recovery programme. Moreover, the program aims to improve patient engagement, compliance and process effectiveness by allowing patients to remote access their medical data, which currently resides in different systems (HIS. OIS, PACS, etc),

Solution

The implementation consists of a Vitaly solution for Coordinated Care. On the patients’ side, the solution facilitates patient engagement, allowing patients to access their electronic health records and care plan remotely while supporting their dedicated care teams in providing personalised and coordinated care regardless of the location. The first phase is dedicated to digitalising a 5-year Breast Cancer Recovery programme, Colorectal Cancer Recovery programme and Prostate Cancer Recovery programme. The solution aims to support low-risk follow-ups for cancer patients in Lancashire & South Cumbria region.

The solution aims to reduce unnecessary appointments, travel, premature treatment discontinuation and losing patients to follow up. After a patient receives all the recommended cancer treatments, such as surgery, radiotherapy or chemotherapy, an informed decision is made by a Surgeon or Oncologist, who confirms the readiness of the patient to enter the 5-year recovery plan.

Self-Managed Supported Follow-Up: Breast cancer

In the programme patient will (1 year):

• Be required to attend annually planned mammography screenings i.e. the date, time and location are scheduled for the test. This test consists of digital x-ray imaging of breasts. Images are then reviewed by a radiologist who prepares a report.
• Be required to complete a Questionnaire that identifies potential red flags and prompts healthcare professionals when reviewing the questionnaire.
• Receive a review from a dedicated Breast Cancer Coordinator. A decision is made by the Breast Cancer Coordinator based on Radiology Report and Questionnaire results (if they are satisfactory or further examination(s) are needed).

Self-Managed Supported Follow-Up: Colorectal cancer

By transforming the Colorectal Cancer follow-up pathway, patients will be equipped with the essential tools and education to support self-care and self-management.

Effective delivery of Self-Managed Supported Follow-Up will require all patients to perform certain activities of the recovery package, with regular support from a dedicated Care Coordinator based on the workflow described below:

• The patient enters the 5-Year Follow-up pathway once identified as suitable, according to risk stratification protocols, evaluated by the patient’s consultants and other healthcare professionals.
• As the Follow-up programme, follow-up grid and Treatment summary reports are finalised by care professionals, the patient is invited to an individual treatment summary appointment (e.i. Post Operative Appointment) where they are informed about further activities following the treatment.
• Cancer Support Worker (CSW) enrols the patient on the program by:
  • Completing the Treatment summary report;
  • Completing other medical documents and data;
  • assigning roles (care team);
  • developing a personalised plan.
• The patient is invited to Health and Wellbeing Workshops or similar educational workshops to onboard the patients that have joined the programme (training the patients on how to use the application).
• Patient attends scheduled investigations (CT scan, Colonoscopy, CEA blood test, MRI Pelvis, Flexible Sigmoidoscopy) which allow their care teams to effectively monitor potential changes in disease parameters and perform reviews of investigation reports (Virtual clinics).
• Within the programme, 3 types of self-observations questionnaires (Health Needs Assessment (HNA), Low Anterior Resection Syndrome (LARS), ALERT B) have to be filled out and reported to the care team.

Figure 2: An example of Colorectal cancer follow-up pathway

After 5 years of following the Colorectal SMSFU programme, the patient is being discharged. To successfully perform this action, the final HNA questionnaire needs to be filled in and the discharge report is linked from the collaborative Healthcare Information System, so all involved care professionals can access the latest insight into individual patient documentation.

The programme is rolling for 5 years in a row with the same events and it can be partially customised by healthcare professionals in order to individualise the recovery programme as much as possible.

Vitaly Patient enables patients to access relevant medical data, which resides in different systems (hospital information systems (HIS), oncology information systems (OIS), PACS, general practitioners’ systems and others) and are available via the health information exchange backbone (HIE backbone). Apart from the already mentioned benefits for patients, the solution offers accessible online communication between patients and healthcare professionals via secure messages, 24/7 self-care management using health journals, questionnaires and Online appointment management and optimisation of processes in general.

The following services will enable document exchange between the patients and healthcare professionals. The documents can also be manually uploaded by healthcare professionals.

Self-Managed Supported Follow-Up: Prostate cancer

The collaborative platform enables self-managed cancer follow-up pathways for patients with prostate cancer, offering better guidance and sufficient support to patients, enabling them to take ownership of their care and stay in touch with their care teams whenever in need.

• When a patient completes their treatment and is found eligible for the programme, their Treatment Summary Report is finalised and a dedicated Cancer Support Worker initialises the care map template most applicable to the patient’s condition and treatment plan.
• Additionally, the patients are invited to a Supported Self-Management Education workshop where they are informed about the programme, their treatment, how to manage it, and possible conditions that may occur in the future. Patients can also receive log-in credentials and details for the patient application (MiPRES), enabling them to actively participate in the programme.

• Patient attends their scheduled investigations (PSA tests, U&Es, FBC, Alkaline phosphatase, LDH, DRE, MRI) which allow their care teams to effectively monitor potential changes in disease parameters and perform reviews of investigation reports (Virtual clinics).

• The Cancer Support Worker can also organise a Virtual Clinic with the patient where the results are reviewed to evaluate whether the patient can continue with the programme or other interventions are needed.
• During the program, the patient must also answer a variety of Questionnaires (EPIC, ALERT B, Health Concerns Questionnaire) as part of the care map template assigned to them.
• Upon completion of the programme, the patient is discharged to primary care.

Standards

The whole process is designed as a web-based application in a way that is user-friendly for the end-user with the end goal of making every step of the process efficient, considering standards within the Healthcare Information Technology domain. In this implementation, the following IHE standards are used:

• Cross-Enterprise Document Sharing (XDS)
• Patient Demographics Query (PDQ)
• Patient Identifier Cross-Referencing (PIX).

Overall both solutions are Health Level 7 (HL7) and Fast Healthcare Interoperability Resources (FHIR) standard based.

Benefits

For care teams

• Guidance to support their patients with self-managing their health conditions and how/whom to contact within the care team – all in a single application.
• Pre-defined plan for required investigations and crucial follow-up appointments that can be effortlessly scheduled and managed, for a specific patient, within the application.
• Reminders to remind patients about the planned check-ups and notifications for the care team to alert them if the patient did not attend the scheduled check-ups.
• Distribution of questionnaires to gather patients’ self-observations (red flag questions, HRLQ questionnaires …) and notifications for the care team if the questionnaire results are out of predefined goals/ranges.
• Clinicians are empowered to:
  • manage their workload more effectively,
  • track patient programmes/plans and
  • identify opportunities for better service delivery.

For patients

• Access to their personal health records, relevant documentation and details about personal care map, treatments received, reports and future treatment plan;
• Other useful information needed for a successful recovery from their cancer treatment;
• Individualised care from specialists with patients’ clear understanding of where they are in their annual 5-year recovery plan, minimise discontinuity of care, anxiety, especially when they are moved/transferred from one service to the next.