Theme 08: Patient Pathway
Patient pathways should cover the entire pathway from diagnosis to palliative care/long-term survival/survivorship. Based on national health system structures, the tumour-specific patient pathway should be comprehensive and guideline based. They should be assessed e.g. with the help of quality indicators (QIs) and Patient Reported Outcomes (PROs). A patient pathway should help to deliver high-quality care and foster improved access to research by bringing researchers and care providers together. Patient Pathway should improve cooperation and coordination between partners within the tumour-specific networks including the transversal aspects of the tumour-based pathways in the CCI.
According to the JA iPAAC, “a patient pathway is an evidence-based tool that supports the planning and management of the care process of individual patients within a group of similar patients with complex, long-term conditions. It details the phases of care, guiding the whole journey a patient takes by defining goals and milestones, and supports mutual decision-making by the patient and his/her multidisciplinary care team collaborating in a comprehensive network of care providers.”
The goal of patient pathways is to ensure:
- Improved quality of care
- Greater predictability for both patients and caregivers
- Better cost control
- A stronger focus on patient experience and engagement
Level 1
PP111
Initial discussions regarding the development and usage of shared patient pathways within the CCI have taken place.
Level 2
PP121
Shared patient pathways are developed at least for the most common tumour entities treated within the CCI and their implementation is prepared.
Level 3
PP131
Shared patient pathways are actively used for the tumour entities with the highest number of cases treated within the CCI (TOP5).
Level 4
PP141
Shared patient pathways are actively used for the majority of tumour entities treated within the CCI (min. 90%)
*
.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| Prova | ||||
| For all tumour entities a patient pathway is in use | PP111 |
PP121 |
PP131 |
PP141 |
Level 1
PP211
Initial discussions to prepare a process for a systematic development and updating of patient pathways within the CCI have taken place and a responsible coordinating team
(persons and institutions)
have been named.
Level 2
PP221
Criteria for the evaluation of patient pathways within the CCI including the instruments,
methods and processes
to be used has been defined.
Level 3
PP231
The process for patient pathway development and updating is actively maintained, controlled and evaluated.
PP232
An easily accessible overview of available patient pathways is provided to all partners within the CCI, e.g., via the CCI website.
Level 4
PP241
A continuous evaluation and improvement process for the patient pathway development and updating process within the CCI is established.
PP242
Patient versions of the patient pathways are available for patients within the CCI.
Level 2
PP222
A concept for indication of
data collection points
in patient pathways has been drafted.
Level 3
PP233
Data collection points
are indicated for some of the patient pathways used within the CCI.
Level 4
PP243
Data collection points
and, if possible data fields, are indicated for all patient pathways used within the CCI.
Level 2
PP223
A (step-by-step) concept for the digital integration of patient pathways within the CCI has been drafted.
Level 3
PP234
The digital integration of patient pathways within the CCI has been started according to the (step-by-step) concept.
Level 4
PP244
Patient pathways are embedded in the technical infrastructure of the whole CCI.
PP245 [optional]
Remote monitoring systems based on digital technology, such as tele-health or tele-monitoring, are fully operational and integrated into the patient pathway.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| There is an implemented agenda how the used patient pathways in the CCI are developed and updated |
PP211 |
PP221 |
PP231 PP232 |
PP241
PP242 |
| Data collection points should be indicated in the patient pathways | PP222 |
PP233 |
PP243 | |
| Patient pathways are embedded in the technical infrastructure of the CCI (MM-WG: = Level 4) | PP223 |
PP234 |
PP244 PP245 [optional] |
Level 1
PP311
Initial steps discussions to define the scope of the patient pathways within the CCI, the involved institutions, roles and necessary tasks have taken place.
Level 2
P321
The patient pathways address the tumour-specific multi-professional team (MDT) and describe the roles
and tasks of one of the three
specialist groups
(diagnostic, therapeutic and patient-centered care specialists) involved.
P322
The patient pathways cover and describe MDT meetings with clearly defined roles, responsibilities, and documentation.
P323
Patient pathways clearly outline the various institutions, their interfaces and roles in the patient journey.
P324
The patient pathways have a comprehensive scope, addressing all stages from diagnosis to palliative care, long-term survival, and survivorship.
Level 3
P331
The patient pathways address the tumour-specific multi-professional team (MDT) and describe the roles
and tasks of one of the three
specialist groups
(diagnostic, therapeutic and patient-centered care specialists) involved.
PP332
(Tumour-specific) Highly specialised services (e.g. breast reconstruction) are offered centralized in a CCI, while standard oncological care (e.g. breast conservation therapy) is provided in several tumour-specific networks.
PP333 [If applicable]
Link to non-clinical institutions, like cancer registries, biobanks, research centres/departments are implemented and described in the patient pathway.
Level 4
P341
The patient pathways address the tumour-specific multi-professional team (MDT) and describe the roles
and tasks of one of the three
specialist groups
(diagnostic, therapeutic and patient-centered care specialists) involved.
P342
The patient pathways cover referral from screening/prevention/survivorship to hospitals/networks and referral back to primary care/ambulatory care/local hospitals and social services.
PP343 [optional]
Cooperation with other national and/or cross border groups/networks for patients/clinicians are integrated in the patient pathways.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| Patient pathways are comprehensive (scope of the patient pathway) | PP311 |
P321
P322
P323
P324 |
P331
PP332
PP333 [If applicable] |
P341
P342
PP343 [optional] |
Level 2
PP421
Initial discussions to formalise and systematically describe the
tumor-specific needs
in patient pathways within the CCI have taken place.
Level 3
PP431
The patient pathways contain a reference to the underlying evidence-based guidelines (name, version, recommendation).
PP432
The patient pathway contains an algorithm for the identification of hereditary tumour diseases including, if necessary, human genetic examination and counselling (at least for the entities: breast, ovarian, colorectal, renal and paediatric tumour).
Level 4
PP441
Tumour-specific environmental and lifestyle risks (e.g. asbestos, smoking, obesity, infectious factors) are included in the patient pathway and are addressed in the communication/therapy (e.g. smoking cessation, vaccination).
PP442
Specialised disciplines or questions that are tumour/therapy-specific are addressed in the patient pathway with the aim to prevent long-term effects (i.e. cardiologists for Herceptin-therapy, or information about and application of fertility-preserving measures, specific topics for adolescents and young adults (AYA)).
Level 3
PP433
The patient pathway includes obtaining informed consent and screening for possible study inclusion.
Level 2
PP422
Initial discussions regarding the incorporation of the
patient perspective
in pathway development have taken place.
Level 3
PP434
The
patient perspective
is included in the patient pathways.
Level 4
PP443
A continuous evaluation and improvement process for the integration of the
patient perspective
in the patient pathway is established.
Level 2
PP423
Initial discussions regarding the inclusion of
requirements
for sufficient staff and adequate equipment have taken place.
Level 3
PP435
The process for the inclusion of
requirements
for minimum technical, personnel and structural resources has been started (for example addressed in associated documents).
Level 4
PP444
The inclusion of
requirements
for minimum technical, personnel and structural resources is implemented for all patient pathways used in the CCI.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| Patient pathways include tumour-specific characteristics |
PP421 |
PP431
PP432 |
PP441
PP442 | |
| Patient pathways support the enrolment of patients in studies and encourage the conduct of studies | PP433 |
|||
| Patient pathways include the patient perspective | PP422 |
PP434 |
PP443 | |
| Patient pathways include minimum technical, personnel and structural resources | PP423 |
PP435 |
PP444 |
Level 2
PP521
Criteria for the evaluation of patient pathways within the CCI, including the instruments, methods and processes to be used, have been defined.
PP522
Quality indicators are defined for the evaluation.
Level 3
PP531
A patient pathway evaluation concept is in use and first evaluation results are available.
Level 4
PP541
The results of the evaluation are used for the updating process of the patient pathways within the CCI.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| A regular evaluation of the patient pathways takes place | PP521
PP522 |
PP531 |
PP541 |