Response to D. Rayson et al - re: Correspondence - Accrual strategies for cancer genetics research: blurred boundaries (ethics)

Correspondence: Narod/Metcalfe:

"If Drs Rayson and Gelmon1 are under the impression that we
have influence over how the Globe and Mail2 chooses to present its
news items, they are mistaken—perhaps their comments should be
addressed to the Globe Editorial office. We too are frustrated by the
incessant optimism of the media when they enter into the realms of
genetics or oncology—each gene discovery ineluctably will lead to a
treatment of a devastating genetic disease, each new molecule is a
target for a new cancer drug—but we suppose that unfettered optimism
is good for the newspaper business and is included in the price
we pay for freedom of the press...."

If the opinions of Drs Rayson and Gelmon are representative of the medical communities of Nova Scotia and British Columbia, then it is unlikely that populationbased genetic screening for Jewish women will be introduced in those provinces any time soon."

REFERENCES
1. Rayson D, Gelmon KA: Accrual strategies for cancer genetics research:
blurred boundaries. J Clin Oncol doi: 10.1200/JCO.2010.29.0759
2. Cancer test a genetic crystal ball for Jewish women. Toronto Globe and
Mail, Saturday May 24, 2008
3. Metcalfe KA, Poll A, Royer R, et al: Screening for founder mutations in
BRCA1 and BRCA2 in unselected Jewish women. J Clin Oncol 28:387-391, 2010
DOI: 10.1200/JCO.2010.29.1146; published online ahead of print at
www.jco.org on May 17, 2010

Study tracks effects of interruptions on doctors - CNN.com

Networking power of the web shifting power balance between docs and patients - media

End of life in cancer patients: drugs or words? — Ann Oncol

Note: editorial partial extract from full paper ($$)

Should Doctors Google Their Patients? - WSJ

Abstract/fulll text: Four minutes for a patient, twenty seconds for a relative - an observational study at a university hospital

Agency for Healthcare Research and Quality - Questions Are the Answer: Build Your Question List

Note: general

Burnout and engagement among resident doctors in the Netherlands: a national study.

Conclusions: "As more than a fifth of the medical residents who responded could be diagnosed as suffering from burnout, we conclude that this problem needs addressing in the Dutch health care system, especially given that a relationship was proven between burnout and suboptimal patient care."

Doctor who was excluded for raising patient safety concerns is entitled to substantial damages - BMJ

Safe Work Hours, Safe Patients | WakeUpDoctor.org

"Other industries responsible for public safety (e.g., the transportation and nuclear power industries) have been subject to federal regulations that limit the number of hours their employees can work for decades."

Health stories by experts more credible than blogs

Email Guidelines for Patients (Patient Handout)

About these guidelines

Adopting appropriate email practices with patients is an important step to safeguarding the integrity of the doctor-patient relationship and maintaining the confidentiality of sensitive patient information.
The email guidelines that you are about to generate will outline when, why and how your patients may use email to contact you.
These guidelines can be:

• printed and used as a patient handout
• used as a patient consent form
• used as a statement of best practices for you and your staff
• saved on your computer
• downloaded from your practice website

(Canadian Medical Protective Association).

Why doctors' stories matter

"...As I read the winning stories, I had a fantasy, which is probably not a good idea to apply literally, but it’s useful as what philosophers would call a thought experiment. My fantasy was that in a doctor’s waiting room, instead of old magazines and public health brochures, patients might pick up stories that the doctor had written—stories not unlike these winning stories. And maybe patients would then bring in their stories and leave copies of those on the rack next to the doctor’s stories. That would open the silent world on both sides."

AMA news: Participatory medicine: A high-tech alliance with patients

"At its most basic level, participatory medicine means shared decision-making and deep patient engagement. Because of the rise in technology use -- as well as an increase in out-of-pocket health care expenses -- this has gone well beyond the traditional tell-me-where-it-hurts conversation between patient and doctor in the exam room....Physicians "are afraid this is something that will cost them time and money, and it will create arguments with patients," Dr. Greene said."

2010 Who Is Responsible? The Role of Family Physicians in the Provision of Supportive Cancer Care

Note: the issues from the family physicians' perspective

Second Opinion - Doctors Often Delay Conversations About Death With Terminal Patients - NYTimes.com

this is a good article for everyone, IMHO

OCATS requires your help

Message forwarded: website http://www.ocats.ca


H E L P!!!  We know it’s Grey Cup weekend, and Christmas is coming, and we’ve all got better things to do.  But, imagine in the middle of all this our Ministry of Health, without any consultations or even contacting the doctors with urgent and critical issues CANCELLED the meeting where they promised they would finally have a solution for us.

You know that for over a year now, since spring 2008, we’ve been asking for proper support for our gynecologic oncologists serving southern Saskatchewan.  In every other jurisdiction these specialists working in a clinical setting (i.e. a hospital!) with proper medical, nursing, pathology, radiology support.  But OH NO, not in Regina!  Here we expect these doctors to continue struggling to find simple office space to examine their patients and keep files.  They have to go out and find their own nursing, after hours and medical support.  This is beyond BIZARRE!  In the medical issues business, this has got to be something we can actually figure out and fix?  No?

Last meeting, I presented a solution for the interim.  Reimburse the doctors immediately for their private practice space, get a proper nurse in their for them.  This is minimal, while a real solution is sought.  Gov’t response – NONE, NADA.

This meeting was put off because not only is there no solution yet, no one has even contacted the doctors, visited them, observed their needs, nothing.  NADA.  Do we want/need these specialists - highly sought out and highly skilled experts who need to be in the operating room or examining patients – to be out looking for appropriate office space, trying to figure out how to PAY for it, recruiting for their own support staff, filling the supply cabinets????

Remember in the spring when a Regina gyne onc told the media that the working conditions had become unworkable?  This meant the specialists were considering closing their private practices.  This meant patients had to be shipped out of Regina?  Well – they were told a lot of promises, as was OCATS.  They were told a solution would come before Sept 1^st, then they said oh that was summer; we’ll get it done by fall.  Well fall has been deferred til next year!  Enough is Enough!!!!  Evidently the only time the Ministry seriously listens is when women in large numbers speak loudly.  The legislative assembly will be sitting for only a few more days. 

P l e a s e    h e l p    u s    s p e a k    l o u d l y !

Write to:  The Honourable Don McMorris, Minister of Health, Government of Saskatchewan, Minister's Office, Room 302, Legislative Building, 2405 Legislative Drive, Regina, SK, S4S 0B3, Fax (306) 787-0237, minister.he@gov.sk.ca, sophie.ferre@gov.sk.ca

Copy to:  (this is really the job of the Regina Qu’Appelle Health District) Dr. Dwight Nelson, CEO RQHD dwight.nelson@rqhealth.ca, Dr. Chris Vuksic, Chris.Vuksic@rqhealth.ca

And Copy to:  Dwain Lingenfelter, Leader of the Official Opposition and Opposition Health Critic, Judy Junor, c/o Dwight Yasinowsky at dyasinowski@ndpcaucus.sk.ca

cc:  OCATS too please, ocats@ocats.ca

Short, Sweet and To the Point is all you need:

Dear Minister – Ovarian cancer patients don’t have enough time for this continue bureaucratic fumbling.  There are highly paid administrators and executives are various levels who should be able to resolve the issue of poor working conditions for Gynecologic Oncologists serving Southern Saskatchewan.  Enough is enough.  At minimum get these specialist’s office space and support staff in place and paid for before the end of the year.

2007 One Women In Three Under-Treated For Ovarian Cancer - CME Teaching Brief® - MedPage Today

One Women In Three Under-Treated For Ovarian Cancer - CME Teaching Brief® - MedPage Today