CONTACTS 

SUBJECTS
Default Null Subject Account for Blank Record

0403 -
0403 -    ..
0404 - Summary/Objective
0405 -
040501 - Follow up ref SDS 17 0000, ref SDS 16 0000.
040502 -
040503 -
040504 -
040506 -  ..
0406 -
0407 -
0408 - Background
0409 -
040901 - On 100501 1037 Millie letter to medical team confirms Kaiser's new
040902 - strategy to treat Millie's cancer with "targeted therapy." ref SDS 11
040903 - F25O  Millie requests Kaiser immediately switch from Abraxane
040904 - chemotherapy that has failed, and implement Doctor Rugo's plan at UCSF
040905 - on 090616, to treat Millie with PARP that is "targeted" to Millie's
040906 - rare patient profile of "triple negative" and avoids pain and
040907 - suffering from chemotherapy side effects, and for the purpose of
040908 - recovering from UCSF medical mistakes. ref SDS 11 U47P and ref SDS 11
040909 - U49V
040911 -  ..
040912 - On 100501 2017 Millie received letter from Doctor Rugo saying she will
040913 - communicate with Doctor Johnson at Kaiser on the work plan for Millie
040914 - to recover from the 11th relapse of cancer. ref SDS 12 HH4I
040916 -  ..
040917 - On 100502 0140 Millie responds to Doctor Rugo's letter reporting
040918 - commitment to communicate with Doctor Johnson at Kaiser on the work
040919 - plan for Millie to recover from 11th relapse of cancer. ref SDS 13
040920 - HH4I
040922 -  ..
040923 - On 100502 0140 Millie responds to Doctor Rugo's letter reporting
040924 - commitment to communicate with Doctor Johnson at Kaiser on the work
040925 - plan for Millie to recover from 11th relapse of cancer. ref SDS 13
040926 - HH4I
040928 -  ..
040929 - On 100503 1522 Millie notifies medical team of difficulty using Kaiser
040930 - secure email; asks about getting treatment with Abraxane chemotherapy
040931 - scheduled for Wednesday, 100505, or switching to a "targeted" agent.
040932 - ref SDS 15 HH4I
040934 -  ..
040935 - On 100503 1945 Millie receives letter from Kaiser saying to continue
040936 - with Abraxane chemotherapy for 2 more treatments, and then after 2
040937 - weeks without treatment the doctor will discuss next steps in a
040938 - meeting at Kaiser. ref SDS 16 HH4I
040940 -  ..
040941 - On 100503 2338 Millie notifies medical team that Kaiser guidance will
040942 - be implemented to get 2 treatments that complete 3rd cycle of
040943 - Abraxane, ref SDS 17 HH4I, as ordered by the doctor, and despite
040944 - evidence of Millie's cancer is progressing with Abraxane. ref SDS 17
040945 - 6X8T
040947 -  ..
040948 - On 100504 1609 Sara, Practice Manager for Breast Care Clinic, called
040949 - to confirm Doctor Rugo plans to call Kaiser about developing a work
040950 - plan for Millie to recover from 11th relapse of cancer caused by UCSF
040951 - medical mistakes. ref SDS 0 NT5N  Sara asked Millie if she has other
040952 - concerns; Millie concerned about getting response from medical team on
040953 - comparing treatment trade-offs pending for a year. ref SDS 0 FK9I
040954 - Reviewed UCSF medical mistakes, and pending issues. ref SDS 0 NT99
040955 - Sara investigating patients right to use public domain email for
040956 - expediting communications with medical team. ref SDS 0 ZV6M
040957 -
040958 -
040959 -
040961 -  ..
0410 -
0411 -
0412 - Progress
0413 -
041301 - Sara called and advised that Doctor Rugo asked her to call about
041302 - Millie's letters requesting immediate treatment for worsening cancer,
041303 - sent to the medical team on Saturday, 100501 1037, ref SDS 11 F25O,
041304 - and again on Sunday. 100502 0140, ref SDS 13 HH4I
041306 -  ..
041307 - Sara recalled meeting at UCSF with Peter to resolve the "computer-in-
041308 - the-cafeteria" incident on 080529 0830. ref SDS 4 H56O   At that time
041309 - Sara was gracious and professional.
041311 -  ..
041312 - Today, Sara indicated that Doctor Rugo has communicated with Doctor
041313 - Johnson, or still intends to do so for developing the work plan on
041314 - Millie recovering from the 11th relapse of cancer, as requested in the
041315 - letter to UCSF on 100501, ref SDS 11 F25O, and as set out in Doctor
041316 - Rugo's response later in the afternoon, reported on 100501 2017,
041317 - ref SDS 12 456L
041318 -
041319 -        [On 100505 0411 letter to medical team confirms UCSF work plan
041320 -        for Doctor Rugo to call and collaborate with Doctor Johnson on
041321 -        prescribing Millie's next treatment. ref SDS 18 8J5W
041323 -  ..
041324 - We reviewed the record briefly on Tara's call 8-months ago.  On
041325 - 090716, like Sara today, Tara called for Doctor Rugo and said, like
041326 - Sara relates today, that Doctor Rugo will collaborate with Doctor
041327 - Johnson on the work plan for Millie's recovery from medical mistakes
041328 - which Millie suffered getting radiation treatment at UCSF, and which
041329 - caused her cancer to spread.
041331 -  ..
041332 - Sara feels sure today that Doctor Rugo has either already contacted
041333 - Doctor Johnson at Kaiser, or will do so soon.
041335 -  ..
041336 - Sara asked how Millie is feeling today?
041338 -  ..
041339 - Millie said she feels worried delays getting treatment are making her
041340 - cancer worse, as set out in her letters to the team, cited by Sara per
041341 - above, ref SDS 0 NT5N
041343 -  ..
041344 - Concern for 12-months has been for the medical team to submit written
041345 - analysis comparing trade-offs on treatments "targeted" to Millie's
041346 - cancer for recovering from medical mistakes at UCSF, as required by
041347 - standard of care for evidence based medical practice.
041349 -  ..
041350 - Millie's primary care physician at Kaiser reported in a recent meeting
041351 - on 100427 that treatment "targeted" to Millie's cancer with minimal
041352 - side effects is the correct strategy at this time, because Millie's
041353 - cancer has mutated to resist chemotherapy drugs. ref SDS 10 SJ6N  Since
041354 - Millie has already received over the past 9 years all of the
041355 - chemotherapy agents for treating breast cancer, "targeted" drugs are
041356 - her only remaining options, especially since she can no longer
041357 - tolerate pain and suffering from side effects of chemoterapy.
041359 -  ..
041360 - Sara asked if Millie has talked to her doctor about this?
041362 -  ..
041363 - Millie related concern that the medical team has been notified, but
041364 - has not responded the past 12 months.
041366 -  ..
041367 - Sara feels Doctor Rugo can address this in her current communication
041368 - with Doctor Johnson at Kaiser.
041370 -  ..
041371 - Sara asked about medical mistakes at UCSF?
041373 -  ..
041374 - Reviewed background when Doctor Hsu reported the Radiation Oncology
041375 - Department made a mistake providing radiation services for Millie,
041376 - which were prescribed by Doctor Rugo and performed on referral from
041377 - Kaiser, reported 090609 0900. ref SDS 8 W65W
041379 -  ..
041380 - At that time, Millie asked for UCSF's work plan to recover from
041381 - medical mistakes, also reported on 090609 0900? ref SDS 8 1P3K
041383 -  ..
041384 - Doctor Hsu ordered a CT test to evaluate scope, ref SDS 8 W66T, and he
041385 - prescribed treatment with MPA in the Breast Care Clinic supervised by
041386 - Doctor Rugo. ref SDS 8 1P42
041388 -  ..
041389 - The next week, Millie met with Doctor Rugo and started treatment with
041390 - MPA, as ordered by Doctor Hsu, reported, 090616 1245, ref SDS 9 D647
041392 -  ..
041393 - At that time, Millie asked about follow on treatments, if MPA doesn't
041394 - work, reported 090616 1245? ref SDS 9 EF3G
041396 -  ..
041397 - Doctor Rugo said she has other treatments "targeted" to my cancer, in
041398 - the event MPA was not effective.  She mentioned PARP technology as
041399 - particularly promising. ref SDS 9 KD6L
041401 -  ..
041402 - A month later on 090716, Millie suffered difficulty breathing.  Doctor
041403 - Rugo was traveling, so Tara performed the examination to evaluate
041404 - starting the 2nd cycle with MPA.  She was excellent, as always.  Tara
041405 - was concerned Millie's problems breathing might be caused by MPA,
041406 - since pulmonary embolism is a rare side effect of MPA, and causes
041407 - shortness of breath.  She called later that night and advised that
041408 - Doctor Rugo wanted to end MPA treatment as a precaution against Millie
041409 - getting PE.
041411 -  ..
041412 - Tara then made a surprising report that UCSF did not have any targeted
041413 - treatments for Millie until September, when a PARP protocol would
041414 - become available.  Tara advised that the doctor prescribed Gemzar
041415 - chemotherapy for Millie until she could be treated with PARP in
041416 - September.  Millie was shocked because Doctor Johnson at Kaiser had
041417 - already said that chemotherapy was not appropriate for Millie's
041418 - patient profile, since her cancer has mutated through 9 relapses to
041419 - resist chemotherapy.  Moreover, Kaiser's published guidance cautioned
041420 - against Gemzar for patients, like Millie, who were being treated with
041421 - radiation, and who were being treated with blood thinners, reported on
041422 - 090605. ref SDS 7 V34K
041424 -  ..
041425 - Tara further related in her call on 090716, that Doctor Rugo wanted
041426 - Millie to get Gemzar at Kaiser, because Kaiser can provide the
041427 - treatment at less cost than at UCSF, and so this would mitigate UCSF
041428 - damages for the cost of Millie's care to recover from UCSF medical
041429 - mistakes.
041431 -  ..
041432 - Millie agreed to this in order to assist UCSF, even though she knew
041433 - that chemotherapy has devestating side effects, reported by Kaiser's
041434 - Oncology Pharmacy on 090601. ref SDS 6 8J8L  She did her best to be a
041435 - team player, expecting the team to do their part.
041437 -  ..
041438 - Kaiser provided medical services for UCSF by giving Millie treatment
041439 - with Gemzar.
041441 -  ..
041442 - There has been continuing delay getting Doctor Rugo and Doctor Johnson
041443 - to collaborate, as planned in Tara's call on 090716.  The record shows
041444 - this has not been done for the past 8 months, indicating systemic
041445 - resistance to the call Doctor Rugo proposed in her recent letter on
041446 - 100502, and related again in Sara's call today, per above. ref SDS 0
041447 - SN6L
041449 -  ..
041450 - Sara apologized for delay at UCSF collaborating with Kaiser to provide
041451 - treatment for Millie in time to be effective.  She asked how Millie
041452 - is doing today?
041454 -  ..
041455 - Millie explained current pain and suffering from progressing cancer,
041456 - and from side effects of chemotherapy, and from Neupogen needed to get
041457 - chemotherapy for recovering from the 10th relapse of cancer, as
041458 - explained in the letter to Doctor Rugo and the medical team on 100501
041459 - 1037. ref SDS 11 U49Q
041461 -  ..
041462 - Sara has also coordinated with the UCSF Risk Department, and seemed to
041463 - indicate today that UCSF lawyers interpret Federal regulations as
041464 - denying patients the right to waive confidentiality entitlement in
041465 - order to expedite communciations using public domain email, and for
041466 - the purpose of timely, accurate communication that saves lives, time,
041467 - and money, previously presented to Kaiser on the same issue, reported
041468 - in the record for 081103. ref SDS 5 E59N
041470 -  ..
041471 - Sara doesn't know what Federal regulations UCSF lawyers are using for
041472 - guidance, nor what the regulations actually say that justifies denying
041473 - patients the right to choose the level of confidentiality best suited
041474 - to the need for timely, accurate communications with her medical team,
041475 - and with transparency that encourages action in time to be effective
041476 - saving lives, time, and money.
041478 -  ..
041479 - HIPAA regulations on patient confidentiality are listed on 071009
041480 - 1644. ref SDS 2 TG3K
041482 -  ..
041483 - There is nothing evident in the HIPAA regulation that prevents
041484 - patients from disclosing personal health information to anyone, nor
041485 - from giving others the right to do so for timely case management of
041486 - the patients health care.  The restriction is on providers to avoid
041487 - disclosure of health information unless authorized by the patient.  In
041488 - this case, Millie authorizes her health care providers to use public
041489 - domain email in order to expedite the work, because if the work is not
041490 - completed on time, she will die.
041492 -  ..
041493 - Sara could not offer a rational basis for Millie not to use public
041494 - domain email and instead use UCSF "secure email," in light of Millie's
041495 - waiver of liability for inadvertent breaches of confidentiality by
041496 - UCSF and Kaiser using public domain email, reported in her letter to
041497 - the medical team on 100502 0140, ref SDS 13 CO3W, and further in light
041498 - of difficulties and delay handling "secure email," shown by Millie's
041499 - experience yesterday trying unsuccessfully to open a "secure email"
041500 - from Kaiser, reported on 100503 1522, ref SDS 15 HH4I  Kaiser's
041501 - instructions present significant challenges, shown on 100502 2143.
041502 - ref SDS 14 HH4I
041504 -  ..
041505 - Sara plans to discuss the matter further with the Risk Department, and
041506 - report back to Millie on authority UCSF feels constrains patients from
041507 - disclosing personal information, and from using public domain email
041508 - that is fast and easy and familiar.
041509 -
041510 -            [On 100601 0830 Doctor Johnson reported he received
041511 -            securemail from Doctor Rugo at UCSF encrypted to protect
041512 -            confidentiality of Millie's health records, but he could
041513 -            not open the letter; he sent Doctor a securemail advising
041514 -            he could not open her securemail, and he received back a
041515 -            public domain email from Doctor Rugo that she could not
041516 -            open Doctor Johnson's letter from Kaiesr; as a result of
041517 -            failed communcation, Doctor Johnson was unable to prescribe
041518 -            treatment for Millie to recover from medical mistakes
041519 -            getting radiation treatments at UCSF on referral from
041520 -            Kaiser; resulting in Millie being forced into Hospice to
041521 -            die. ref SDS 19 D658
041523 -  ..
041524 - Explained that Millie wants to be a team player, and so expects to
041525 - resolve this matter constructively for Doctor Rugo's continued
041526 - support.
041528 -  ..
041529 - The concern is that regardless of whether Federal regulations can be
041530 - reasonably construed as requiring UCSF medical patients to use secure
041531 - email, which delays the work and increases risks to patient
041532 - confidentiality, Doctor Rugo and others at UCSF feel constrained to
041533 - use it, because "secure email" is fashionable and so someone at a high
041534 - level in the chain of command has ordered it, regardless of the
041535 - merits.  Therefore no one will review the actual merits, because this
041536 - takes time, and requires someone to stand up and be counted.  People
041537 - in big organizations worry that standing up to be counted leads to
041538 - being counted among the missing.  Therefore it seems easier for
041539 - everyone to "go along to get along," and hope that sooner or later
041540 - folks will see the light and bring performance into alignment with
041541 - rationality.  In this case, Millie's time is limited.  There is not
041542 - enough time to wait for fashion to change.
041544 -  ..
041545 - Since some customers insist on giving confidentiality the highest
041546 - priority, it seems faster and easier to ask all customers to succumb
041547 - to the lowest common denominator, rather try to keep track of who
041548 - wants and, in Millie's case, does not want secure email.
041550 -  ..
041551 - On 080403, Doctor Rugo reported challenges that limit communication to
041552 - expedite the work through telephone calls. ref SDS 3 SG7I
041554 -  ..
041555 - Now dictating "secure email" turns the wheel of cultural fashion to
041556 - further paralyze communication by insisting on complex processes,
041557 - shown by Doctor Johnson's letter received a few days ago on 100502
041558 - 2143. ref SDS 14 HH4I  Since the essence of "community" that leverages
041559 - human efforts rests on efficient communication enabled by a well
041560 - ordered record, the quality of the work will fall, and costs, delays,
041561 - and frustrations will rise under the 2nd law of thermodynamics,
041562 - reviewed on 040312 0809. ref SDS 1 566F
041563 -
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041565 -
041566 -
041567 -
041568 -
041569 -
041570 -
041571 -
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0416 -