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    Consent Capture for Logitudinal time points

    Technical Questions
    #1

    Just wanted to check how other sites capture the Consent over different time points; we are using OS V1.1; the generic consent is tied to the patient demographics and it has One time point, do other sites use Custom Form to capture this?

    #2

    @Dinesh_Pal

    From what we know,

    1. Many centers do not use openspecimen to store consents
    2. Some upload scanned PDFs
    3. Some create consent tiers and record at participant level
    4. Very few create custom forms (I know at least one center who does)

    ~Sri

    #3

    I realize this is an older post, though I would like to learn what approaches OpenSpecimen users are using to manage consents related to biospecimens. Are any groups using OpenSpecimen to manage consents? Are any groups linking OpenSpecimen with some other application or with a data warehouse that contains consent data? Have any groups been successful in implementing an electronic consenting system and linking with OpenSpecimen? I realize there may not be a one-size-fits-all approach, but I hope this post stimulates discussion and sharing of lessons learned.

    #4

    @Matthew_Marcetich

    Let me answer one question a time from what we know about others implementation.

    We will include this discussion in the next monthly call.

    @ Are any groups using OpenSpecimen to manage consents?
    Many centers do it. @Amy_Brink would be able to chip in with how they do it in WU. I know there are many more.

    @ Are any groups linking OpenSpecimen with some other application or with a data warehouse that contains consent data?
    We did this for UT Southwestern as part of the EPIC plugin that we wrote for them.

    @Have any groups been successful in implementing an electronic consenting system and linking with OpenSpecimen?
    Not that I am aware of. Linking with OS is the easier part since its matter of calling the right REST APIs.

    ~Sri

    #5

    We do have several groups at Wash U that use the consent tracking feature in OpenSpecimen. Now we are on an older version but the concept would still be the same. The consent tiers are built into the Collection Protocol (CP), so that when a patient is registered to the CP, the consent responses are available to be updated based on the patients responses they indicated on the paper consent they have signed. Now this might have been addressed in new versions of OS, the issue we encounter is how to recorded updates to the patient consent. The work around we use it to update the response then also update the consent date field to reflect changes were made.