Cancer treatment in general, Particle therapy, OMOP, DigiOne, European Particle Therapy Network

Hi, everyone

In Norway we’re currently working with all mentioned in the header. No less! At least I have nightmares about how wide this is and how much work is ahead of us, so asking you all: Have you made anything related to this recently that we can tap into, or anyone to work together with? I know the HighMed group have made some archetypes about radiation therapy and or particle/proton. And I know there are work in Christie regarding cancer treatment, especially proton, but not openEHR? You guys in Karolinska, @erik.sundvall ?

Do you know of anyone in the other DigiOne hospitals but Oslo University Hospital (Leeds, Frankfurt, San Raffaele, Maastricht, Saint Luc) who I can get in touch with?

Ping @birger.haarbrandt, @jpieraj. @joostholslag . Others?

I have no capacity to arrange any big PROJECT (yes, with capital letters) in openEHR regarding this, but maybe we can arrange a session or two to share ideas and work done?

Cheers, Vebjørn Arntzen


I’d definitely include @erik.sundvall and @NeillY from the Christie (just as a heads up).

@johnmeredith may have some ideas from Wales.

At Karolinska University Hospital and Sweden in general we have several openEHR-based cancer-related projects/interests in various stages (mostly startup). These are the ones I remember right now:

  • Pathology reporting POC - technical test of approach, not thourougly modelled or properly reviewed. - Status: completed, report in Swedish available.
  • Pathology reporting (initially breast cancer) national project to test if openEHR can be a good tool for capturing needs and testing forms. Will be evaluated by at least Karolinska.
  • Reporting of chemotherapy treatments to national quality registry
  • Genomic report for tumour sequencing (inspired by HiGHmed’s work.)
  • Patient reported form regarding side effects of chemotherapy (and possibly some generation of suggestions/start of EHR notes that can be completed by clinical staff).

Then there is also work started regarding use of catheteters, tubes, lines drains etc that area common in, but not unique to, oncology.

We are (slowly) moving over Karolinska’s modeling work to different (hopefully understandably named) branches of GitHub - regionstockholm/CKM-mirror-via-modellbibliotek: CKM mirror forked from the national Swedish "modellbibliotek" fork of the international openEHR/CKM-mirror


I asked around for Maastricht. Also have a look at Kennisbank | Regionale Oncologienetwerken Datasets for oncology (in Dutch) to be turned into FHIR (and hopefully openEHR one day).
Finally Karkinos, openEHR industry partner could be interesting. @Dr_Anjali_Kulkarni

1 Like

At The Christie our first project was EPROMS (patient reported outcomes). We have only just moved on to the Big Project which is to replace the entire form estate which facilitates creation of the clinical records in the EHR.

We are a small team and I’m sure we would value any sharing no matter how small :slight_smile:

Having just attempted to tag my colleagues it seems they haven’t yet registered here so I’ll invite them to do so asap


Very interesting Erik.

The Christie have just recently started using an in house Patient reported outcomes ‘system’. As to be expected it’s not perfect but the forms are openEHR/Better based.

I look forward to hearing about your experience reporting Pathology and Chemo treatments. Do you use the term SACT, systemic anti-cancer treatment, for chemo and anything not targetted, or is that just UK terminology?



Sorry for late reply, I have a back that’s not being nice to me :frowning:

This project, Clinical Knowledge Manager, should be the place to share archetypes regarding cancer. At the moment is’s called Cancer reporting, but will change to Cancer archetypes, or something similar.

It’s only CTCAE, the TNM archetypes and ECOG there now. If you have an archetype or a template to share, please upload them using the “Propose New Archetype” functionality in the “Archetype” tab.

In Norway we’ll gradually make “mini-templates”, perhaps specifically for certain cancer types, to be used as embedded templates in Archetype Designer. Not sure if we’ll put them in review though. Will upload them here as soon as they’re in a more stable condition.


In Catalonia, we are following a consensus process to standardize the use of sequencing panels for specific tumor types, and based on establishing reference centers, use openEHR-based request forms and results reports for the management of a centralized registry that will soon be a reality. This initiative has been using the assets generated in the openEHR Genomics Project and we would like to continue collaborating in the future to the revision and maintenance of this project with our specific use cases.
Also in radiotherapy, we will start the modelling of data coming from proton radiotherapy devices and storing it in a common openEHR-based registry for the management of patients.
Finally, PROMs have also been developed in different areas and will soon enter the oncologic specialty.

No need to mention that we are very much open to collaborations.


Hi everyone,

Can we re-activate this discussion, and perhaps arrange a Show and Tell from the various groups ‘working on Cancer’ with in the openEHR community?

We are working with (or aware of) quite a few groups, and although I agree with @varntzen that almost certainly there is no appetite for a #BIGproject, there are I think some real common challenges, and, at the very least some shared thinking.

A few suggestions for topics

  1. Common approach to anatomic pathology modelling (at high level)
  2. How to approach TNM staging (with all the variants)
  3. How to handle the high-level view of staging demanded by cancer reporting vs. the very detailed staging instruments needed by Cancer Multidisciplinary teams (MDT). There are similar challenges for things like nodal spread, tumour margins, direct spread
  4. Approaches to handling Cancer MDT meeting documentation which have a core of common elements but very different details for each cancer type

Perhaps we should continue this at Refreshing archetypes related to pathology reporting - #8 by mar.perezcolman