February 21, 2007
11 AM EST
Attending: Morgan Bantley (Chair), Rachel Ellaway, Nancy Gathany, Peter Greene, Carl Singer,
and Valerie Smothers
1 Review of minutes of last meeting
Minutes were approved as submitted.
2 Review updates to healthcare LOM
Morgan began the discussion stating he had submitted comments from the group to the Standards Committee for review. Gabrielle Campbell, the chair person of the Standards Committee posted a last call for comments before she will present the document to the Executive Director on March 5th followed by submission to ANSI for public review. Valerie clarified that the link to update Healthcare LOM incorporates all decisions made prior to the last call. Valerie forwarded a note to the working group outlining the changes based on the decisions from this working group.
3 Collaborative drafting of problems in consent and licensing
Valerie mentioned there is a link on the MedBiquitous webpage under working groups that links to the wiki site to post input. Morgan asked if anyone had suggestions on items that could be listed on the site. Valerie suggested identifying problems to make groups more aware of current problems and begin creating ongoing working documents to start addressing problems in real terms. Morgan suggested Rachel, who is a leader in this area, could provide guidance with listing specific problems. She listed several problems that could be addressed:
- When one shares teaching materials that contain clinical images with colleagues in other countries or jurisdictions, its unclear what licensing and consent steps are necessary.
- A patient has his image in a videotape, which is then included in teaching materials, and he is trying to withdraw consent. How do we accommodate that situation? Sometimes consent has been given, sometimes the patient was a minor at the time or otherwise unable to give consent.
- When someone gives authority or consent, what information is included in the document that they sign?
- What granularity of information do you put in the form given the rapid rate of change in electronic media?
- Someone has an old collection of data or recordings. Are they still allowed to use them?
- When an academic changes jobs, are they allowed to take clinical data and images with them?
- Which organization is responsible for what parts of data when? In the UK, the NHS has ownership of patient recordings, but education is provided by universities. Clinical data could be passed from NHS, to the university, then to a publisher. What consent and licensing information is supplied at each stage, and what are the parties relative rights and responsibilities?
- Is consent for recording x required at all? What do you do if it's not required?
Morgan asked when somebody gives authority to use images, what information is included in the document that they or the guardian signs? He shared the VA requires text to give a broader ability to use assets including the length of time the assets can be used. He said the purpose must be listed and there may be other factors included. He asked the group what standard information should be included on a signed consent form.
Peter shared that he attended a Society for Publishers meeting last week and had lunch with two publishers, one from Wolters Kluwer and one from Hopkins. He was surprised how far the gap is away from current practice. Both publishers required authoring to provide blanket consent but there wasn't a lot of detail underneath that. He asked Rachel if anything comes close to this kind of tracking. Rachel answered having patients get media out of print. Morgan suggested addressing our requirements but keeping things as simple as possible. Peter shared he was pessimistic about a central storage place in the US. Morgan suggested defining the difference between when you need consent and when you don't. He mentioned, according to HIPPA, if you can identify the individual from the information provided, then you need consent. The law-based approach addresses the issues when a claim is filed. Rachel suggested more of an ethically based approach and Peter commented an ethicist could evaluate. Morgan asked Rachel how clear cut was the ethical guidelines and Rachel replied, it was not at all clear cut.
4 Open discussion
Gabrielle was looking into a colloquium planned for this summer. Morgan asked the group if there was anything else they should be doing regarding barriers. Rachel suggested formalizing our questions a bit more. Peter asks what was the next step and Rachel stated we should have an organizational stand from MedBiquitous consistent with an XML document that could accompany some sort of medium. Peter suggested obtaining legal and ethical input first. Morgan ask what sources were available and Peter mentioned embedded licensure is interesting but we need clinical repository or publishing related with a legal driver. He gave the example of Hopkins student medical records with sensitive information that students don't want other employees accessing. Peter agreed with the idea of identifying things that don't require consent like a chest X-ray. The current repositories don't make that distinction. Rachel asked what MedBiquitous' responsibility was. Peter said he would have to review the CHERRI document further before commenting. Morgan shared we would follow-up on the consortium meeting being planned by Gabrielle at the next meeting. Valerie mentioned the ADL Scorm 3rd edition of SCORM 2004 testing tool is no longer testing for metadata conformance. She will forward the newsletter that addresses this.
Morgan concluded the call by encouraging everyone to post additional thoughts and comments regarding consent and licensing to the wiki site.