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First steps in the definition of a standardized data-element catalog for conformation of ICHOM datasets for breast and lung cancerMiguel Pedrera Jiménez1, Carolina Varela Rodríguez1, Montse Alemany Durán1, Daniel Díez
Mazuela1, Pablo Serrano Balazote1, David Pérez del Rey2, Laura Meloni21 Hospital Universitario 12 de Octubre; 2 Universidad Politécnica de Madrid - Madrid (Spain)
Contact email: [email protected]; [email protected]
Acknowledgment
Hospital 12 de Octubre is the specialized health center of reference for the south of Madrid (more than 450.000 citizens) and participates in the European pilots of adoption and validation of ICHOM datasets for lung and breast cancer.
This work takes the first steps in the definition of a standardized catalog of data-elements for the conformation of these ICHOM datasets from EHR and other primary sources of Hospital 12 de Octubre.
Know data demands, and the specific output formats, of the ICHOM datasets of breast cancer and lung cancer.
Produce a standardized catalog of clinical concepts for cancer domain according to the needs of health professionals and ICHOM demands.
Define the transformations rules to produce ICHOM datasets from the catalog of standardized concepts.
1. Study of ICHOM datasets for breast cancer and lung cancer.
2. Modeling a standardized data-element catalog for cancer domain.
3. Build the transformation rules from standardized catalog to ICHOM datasets.
1. ICHOM datasets for breast cancer and lung cancer have been studied. In this first phase, data elements to be able to conform these datasets have been identified.
2. Identified elements have been modeled according to the needs of health professionals and have been standardized in an agnostic way to ICHOM datasets using international standards of modelling and terminology such as SNOMED CT.
3. Transformation rules to conform ICHOM datasets from data elements have been defined. In this phase, we have seen that the codified value-set is not always shared for same variables in the ICHOM datasets for breast cancer and lung cancer.
Data elements should be modeled in response to the needs of health professionals (continuity of care and secondary use).
Data elements must represent, at least, the information required by the ICHOM models.
Data elements must be standardized, both the left part of the element (observable entity) and the right part (observed value).
Standardization must be agnostic to ICHOM datasets. To do this, international standards must be used.
Same variables in breast and lung ICHOM datasets do not share the same codified value-set so the transformation rules will not be always one to one.
This research was elaborated at the Hospital 12 de Octubre and was supported by the Biomedical Informatics Group (Universidad Politécnica de Madrid) and Insite Platform.
INTRODUCTION OBJECTIVES
METHODS
RESULTS CONCLUSIONS
Specific language Universally known language Translations between languages
Transformation rules for ICHOM datasets of breast cancer and lung cancer
Inconsistencies between ICHOM datasets of breast cancer and lung cancer
Patients’ perception regarding the collection of Patient-Reported health outcomes measurement on breast cancer
Ana Belén Salamanca Castro, Carolina Varela Rodríguez, Pedro Ruiz López, Pilar Espallargas, Pablo Serrano Balazote, Agustín Gómez de la Cámara
Hospital Universitario 12 de Octubre - Madrid (Spain)Contact email: [email protected]; [email protected]
Acknowledgment
Hospital Universitario 12 de Octubre is a specialized health center reference for more than 450.000 citizens and participates in the pilots ICHOM all.canand ICHOM CAD.
1. Burden to family and friends. 2. Unnecessary bother the doctors. 3. Digital gap.
1. The main objective when they are diagnosed with cancer is to survive.2. Once illness is overcome, there are rejection feelings towards the treatment or its
effects since the “objective” have been achieved and collateral effects are “unavoidable” and not important.
3. Patients do not show negative emotions regarding the changes on their bodies or their functional capacity neither to the sanitary personal nor to their family.
1. Sanitary personal: collateral effects are known by doctors and, therefore, it has no sense to talk about them during revisions, as the oncologist is not able to avoid them.
2. Family: avoid an unnecessary suffering to them, increasing their anxiety with task which are considered as secondary (such as, for instance, alteration of body image).
4. This situation causes an ambivalence: on the one hand feel rejection to treatments and their consequences, and on the other deny themselves the possibility to express that reject.
5. They would be glad if sanitary attention considers these kind of iccues because they matter to them. So they would support the use of questionnaires.
The digital gap is not a main barrier for the patients, nevertheless a paper support for the questionaries could be useful in some cases.
Genre assigned roles could affect the perception of the illness and of the burden of treatment.
PROM can help illness management improving patient-healthcare professionals communication.
PROM can help health outcomes since they give complementary information to clinicians.
PROM can help define areas of improvement quality of care focussed in patients.
We want to acknowledge the altruistic participation of our cancer patients, their joy and collaborative spirit, they are the reason of our work. We want to thank as well the amazing team of the Breast Cancer Unit and Lung Cancer Unit that find time from where there is none to help us with our research.
INTRODUCTION METHODS
WHAT OUR PATIENTS SAY
RESULTS AND CONCLUSIONS NEW HYPOTHESIS
A qualitative study was performed. Convenience sampling, although theoretical sampling will be performed if necessary in order to confirm or refute the emerging hypothesis. Women were invited to participate by Quality of Care Unit (different from the clinical team who attend them)
KEEP CALM
AND
LET PATIENTSTALK
They authorized their participation by signing an informed consent form. Category saturation will determine the end of data collection and, therefore, the final sample size. Data were analysed as they were collected by an open, selective and axial codification. Information was verified by triangulation methods and it was reported to the participant women, warranting all the time the respect and observance of research ethical principles.
Health outcomes reported by patient promote the valuation of sanitary attention quality, it encourages a sanitary system focused on patient. Nevertheless, it is necessary to know the feasibility for its implementation in each assistance background in order to identify its acceptability among patients.
The aim was to explore the perception of patient diagnosed with breast cancer regarding the collection of health outcomes reported by patients as part of the clinical information for their assistance..
“I will call my son … in any case, with a paper format there is no problema at all…”
According to the patients who participated: PROM provide information about the influence of illness and treatments on
their daily life.PROM will be accepted by patients of cancer attended on the Hospital.
PROM allow the patients to communicate information they do not tell anyone
“I do mind those problems but they havesave my life, what else can we ask?”
“I am suppose to take care of them and now I am the burden, I am the problem…”
