Stream: terminology
Topic: Consent Category [Sweden policy rules]
Roberta Severin (Oct 05 2020 at 14:56):
To the Community-Based care Privacy Confluence:
I am not certain where to post this question.
Does the Netherlands Consent Implementation include these Sweden policy rules in Consent Category https://www.hl7.org/fhir/valueset-consent-category.html?
Coherent Journaling
Blocking
Case Finding
In order to implement this filtering in our information platform we need codes for these policy rules.
Also, I was unable to open the link for VZVZ organization Consent Implementations https://confluence.hl7.org/display/CBCP/Consent+Implementations
Thank you,
@Roberta Severin
cc for visibility @Michelle (Moseman) Miller @Kevin Power @Anita Urio
John Moehrke (Oct 06 2020 at 12:34):
@David Pyke ?
David Pyke (Oct 06 2020 at 12:38):
We don't have those codes in the set, if you could provide details of each, we can get them added.
Roberta Severin (Oct 06 2020 at 13:57):
I received notification from the Netherlands that their consent implementation is in dutch and does not include Sweden policy rules. I have an outstanding email to HL7.eu regarding the Sweden policy rules.
cc @Michelle (Moseman) Miller @Kevin Power @Anita Urio
Roberta Severin (Oct 06 2020 at 13:59):
Thank you @David Pyke . We will submit them as soon as possible. How long will it take to receive the standard codes?
cc @Michelle (Moseman) Miller @Kevin Power @Anita Urio
David Pyke (Oct 06 2020 at 14:00):
We will be using the new UTG process. Hopefully quickly but this is a new process.
Anita Urio (Oct 12 2020 at 15:02):
@David Pyke
Where do we go to submit for hl7 codes?
CC: @Roberta Severin
David Pyke (Oct 12 2020 at 15:02):
YOu'll need to open a ticket at jira.hl7.org against the Consent resource
Sofia Hellberg (Nov 06 2020 at 11:02):
Hi, I have a question regarding the consent resource. First time using Zulip so not sure if my question is suitable in this post, but since it regards consent.category I thought it might. If not, please direct me to where the question is more suitable
Regarding consent.scope and consent.category - as I see it, both of these elements are used to specify the purpose of the consent.
What are the reasons for that consent.scope has cardinality 1..1?
For the specific consent I am considering, it might be applicable to use scope: patient-privacy and category: INFA (consent to access healthcare information). But in general, consents could be given for multiple purposes.
In Sweden, the consent for biobank mean consent to store the material for the purpose of treatment, research, quality assurance and development of healthcare. In that case I have trouble understanding how that could be mapped to FHIR's scope and category.
What are the Sweden policy rules you are referring to @Roberta Severin ? I am interested in understanding what is specified in Sweden so far relating to creating consent profiles.
Thank you,
Sofia Hellberg
David Pyke (Nov 06 2020 at 13:46):
Consent.scope is to set whether the resource is being used for patient privacy, treatment or research consent. Within each, you then set Consent.category as needed. We are discussing the adding of the category codes as listed in https://jira.hl7.org/browse/FHIR-29213
David Pyke (Nov 06 2020 at 13:48):
Consent for biologic sample use would be a separate for treatment and research. We haven't really had anyone discuss the quality assurance use case. Would that be different from research? How would a sample be used for "development of healthcare"?
Sofia Hellberg (Nov 06 2020 at 14:11):
Thanks for your input! I will take a look at that Jira-issue!
Regarding if the resource is used for patient privacy, treatment or research - do you mean that for the biological sample, it would require multiple consents as the sample could be used for both treatment and research?
In Sweden, it is possible for the patient to give consent for both purposes with one consent. But, if the patient would like to restrict what the sample could be used for, the patient can restrict this but by specifying it on the same consent. But maybe that would be a case of actually registering multiple consents in the electronic system even though the paper the patient can use for the consent is just one paper.
Regarding quality assurance and development of healthcare - maybe that can be considered as belonging to the research case as you suggest. I haven't thought about it in that way. I would need to take a look at what the definition of research could be, if it's possible to include it or not. I do know though that the purposes often are separated if it regards research or quality - for example in the biobank law they state both research, quality assurance and development of methods as separate purposes.
In documentation about the biobank law, it explains that samples can be used to compare if new methods give comparable results, it can also be used for teaching purposes which is another way to develop healthcare.
David Pyke (Nov 06 2020 at 14:15):
The patient's consent can be one for many uses, but the FHIR consent resource would need to reflect each individual scope, so yes, you'd need multiple resources, each linking to the source.
David Pyke (Nov 06 2020 at 14:17):
The Consent.scope code list is extensible, so it would be possible for you to add new scopes to the list to cover the QA and teaching use cases.
Sofia Hellberg (Nov 10 2020 at 06:49):
Alright, thanks David.
A question regarding the issue https://jira.hl7.org/browse/FHIR-29213 - from your comment above I thought it would regard consent.category but I interpret the issue as discussing adding codes for consent.policyRule. Is there another issue discussing category or is the issue related to both somehow?
David Pyke (Nov 10 2020 at 13:02):
The title is a misunderstanding. The changes would be to Consent.category
Sofia Hellberg (Nov 10 2020 at 13:34):
Thanks for clarifying.
To me it makes sense that the category will further specify the purpose of the consent and what is suggested in the issue seem suitable - at least regarding the coherent journaling (though I prefer to use the translation electronic health record or shared electronic health record). I noticed that you had asked for an English version of the Swedish law, I haven't found one either - but this page summarizes it: https://www.datainspektionen.se/other-lang/in-english/the-patient-data-act/
If we use references to the law in the category - then I do not understand what the purpose of consent.policy and consent.policyRules are? Or could it be that they are not applicable for the case when using this type of consent and category = "coherent journaling"?
Anita Urio (Dec 22 2020 at 22:06):
@David Pyke For https://jira.hl7.org/browse/FHIR-29213 we are reviewing the findings. Are there examples of how use case 1 and use case 2 could be handled by current design? Thank you for your assistance.
CC: @Roberta Severin @Kevin Power
David Pyke (Dec 23 2020 at 14:03):
Send me an email (david.pyke@readycomputing.com) and we can go over the requirements
Anita Urio (Jan 08 2021 at 15:01):
@David Pyke I sent an email 1/4/21. Let me know if you didn't get it. Thank you!
David Pyke (Jan 10 2021 at 00:30):
I got it, I have been off this week. I'll reply later this coming week.
Last updated: Apr 12 2022 at 19:14 UTC
