Theme 06: Outcomes Research
Outcomes research generates knowledge to improve clinical decision-making and sustainable health care delivery to optimize patient outcomes. Outcomes research studies the performance of the structure and processes of health care systems in terms of the health and well-being of patients and populations. It takes into account a wide range of parameters such as mortality, morbidity, quality of life, symptoms, quality of care, risk factors, health economic measures and patients' experiences, preferences, and values.
Level 1
OR111
Initial discussions have taken place on how
patients
and patient organisations can be integrated in outcomes research activities.
Level 2
OR121
Patients
and patient organisations are actively involved in discussions and decision-making processes in outcomes research activities in parts of the CCI.
OR122
Continuous education and training of
patients
and patient organisations about outcomes research is established in parts of the CCI.
OR123
Continuous education and training of
professionals
about outcomes research is established in parts of the CCI.
Level 3
OR131
Patients
and patient organisations are actively involved in discussions and decision-making processes in outcomes research activities in the whole CCI.
OR132
Continuous education and training of
patients
and patient organisations about outcomes research is established in the whole CCI.
OR133
Continuous education and training of
professionals
about outcomes research is established in the whole CCI.
Level 4
OR141
Patients
and patient organisations actively participate as co-researchers in outcomes research.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| High awareness among patients and patient organisations to enable discussions with patients about outcomes and outcomes research. |
OR111 |
OR121
OR122
OR123 |
OR131
OR132
OR133 |
OR141 |
Level 1
OR211
Initial discussion on the
collection of outcomes data
for research have taken place.
Level 2
OR221
Outcomes data is collected and analysed in part of the CCI.
OR222
The CCI collects data on mortality.
OR223
Initial discussions have taken place on the standardised collection of return to work, sick leave and social participation.
Level 3
OR231
Outcomes data is collected and analysed in the whole CCI.
OR232
The CCI collects data on mortality and PROMS or PREMs.
OR233
A standardised collection of return to work, sick leave and social participation is done in parts of the CCI.
OR234
Questionnaires and documents are available in the main languages, including the major minorities within a CCI, if applicable.
Level 4
OR241
The CCI collects data on mortality, PROMs and PREMs.
OR242
A standardised collection of return to work, sick leave and social participation is done in the whole CCI. And the collected data is analysed and used for development of care.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| Collection and analysis of outcomes data is used to improve and ensure equal access to cancer care, research, and education within the CCI. |
OR211 |
OR221
OR222
OR223 |
OR231
OR232
OR233
OR234 |
OR241
OR242 |
Level 1
OR311
Initial discussions have taken place on how outcomes research data can be linked to the national/regional cancer registry.
Level 2
OR321
Outcomes research data is linked to the national/regional cancer registry for mortality.
Level 3
OR331
Outcomes research data is linked to the national/regional cancer registry for mortality and PROMS or PREMS.
Level 4
OR341
Outcomes research data is linked to the national/regional cancer registry for mortality and PROMS and PREMS.
OR342
Outcomes data is fed into a national/regional cancer registry at least once a year.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| Data for outcomes research are integrated/linked into the national/regional cancer registry |
OR311 |
OR321 |
OR331 |
OR341
OR342 |
Level 1
OR411
First discussions have taken place on the [level of]
digitalisation of outcomes research data
.
Level 2
OR421
Databases and infrastructure are used for harnessing outcomes research data. This includes, e.g., administrative datatbases, biobanks and their level of interface and interoperability.
Level 3
OR431
The usage and distribution of outcomes research data is standardised within a CCI. This includes for example using established protocols and management for data extraction.
Level 4
OR441
The usage and distribution of outcomes research data is harmonised between the different CCIs.
| Level 1 | Level 2 | Level 3 | Level 4 | |
|---|---|---|---|---|
| Accessible standardised data and databases for internal and external partners |
OR411 |
OR421 |
OR431 |
OR441 |