Linnea Olson has taken a turn for the worse: she is in the transitional ICU, and has just gotten 1.5 liters of fluid removed from her lung and is taking antibiotics for pneumonia.
As a result, she will likely be taken off of her current line of therapy.
On the weekly call today, we discussed how we can accelerate the path to get her advice on her best next treatment.
There were three main topics:
Getting access to the latest test results: Reviewers will want the latest information from the Caris test on Linnea’s recent biopsy, e.g., is Linnea still ALK positive?
Preparing reviewers: Inviting them, getting information to them, one-on-one interviews, helping them understand the hackathon process
Discussion process design: how to engage a broad range of people in an open discussion ASAP.
Our (Urgent) Requests: Actively Engage over the Next Week
Please jump on our online discussion forum (Slack) over the next week to review and discuss Linnea’s treatment options, which is available asynchronously 24/7.
Please review and add to the list of Linnea’s external review board candidates. And if you know anyone whom you think could help, please invite them to participate.
Stay tuned for a virtual external review board meeting (Zoom), possibly for next Saturday, July 10, in the afternoon. (The timing of the external review board meeting will be dependent on getting access to the Caris test results, which should hopefully be sorted out in a day or two, and on engaging with Linnea’s medical team at Mass General, Jess Lin.)
Here are my notes from the call today.
You can see the full recording of the weekly meeting (#13) (55 minutes) here:
Kimary Kulig: The key is grounding the participants before they participate in the review board meeting.
Jeff Waldon: How do we work with Jess Lin/Mass General? They must have ideas on what Linnea should do next. Whatever ideas the hackathon comes up with, they will have to go through Linnea’s care team at MGH.
Kimary: We should call it an “external tumor board” to distinguish our contribution from their tumor board. We could work with Jess Lin to prioritize people on our review board candidates list in different disciplines.
Peggy Zuckerman: Maybe Rana McKay, who was Bryce Olson’s oncologist and actively participated in the hackathon, could reach out to Jess Lin to share her experience?
Kimary: Thinking of a workaround for Linnea having to provide access to her data to everyone: Maybe Ciitizen could provide access through their consent coverage that Linnea has already provided? Linnea needs permission to provide access to her data to any hackathon participants.
Robin Yano, Tony Cardillo (Ciitizen): We can check on the agreements we have and get back to you.
Ricardo Salgado: We need to ensure access to all patient data to the hackathon participants upfront.
Kimary: For future hackathons, this should be done in writing by the patient. I’d like to be able to call MGH on Linnea’s behalf and take some of that load off of her.
Kimary: There needs to be a proxy/controller who can request and share data on the patient’s behalf.
Jeff: Brad, you should call Dr. Lin to make a connection with the hackathon. Her assistant would know about her availability, and given the urgency, you should speak to her ASAP.
Kimary: Linnea needs to provide written authorization to share.
Kimary: You should consider not recording the review board meeting to encourage more openness. Maybe you can use good notetakers.
Ally Perlina: We should start knocking on doors to see which ones open.
Grace Cordovano: Linnea should provide consent for release of results to one point person. Does she have a point person? It can be as simple as a signed document at her bedside. Her care team needs to know what is going on in the background. She needs a designated point person.
Tony: I’m looking at her documents, and I can see that she does have an existing healthcare proxy. I will discuss it offline.
Brad: I sent a text to Linnea just now: “It would help if we could speak with your designated point person proxy for your care. Could we connect them with Grace Cordovano to represent the hackathon to work on your behalf? (It is preparatory to talking to Jess Lin.)” She responded, “Of course. I need to figure out who that person is.”
Kimary: The simplest approach I’ve used is to use an institution-specific form to designate a proxy. The person needs access to medical records and to ask questions on Linnea’s behalf.
Grace: We should find out who the care point person is for Linnea, and I would be willing to speak to them before approaching Dr. Lin. There needs to be authorization for treatment.
Brad: I sent a text to Linnea: “If you have energy, could you please ask a nurse to have you sign a HIPAA authorization form for Kimary Kulig and Grace Cordovano?