www.ccocr.org - Guest Speakers - 6th Canadian Conference on Ovarian Cancer Research (patients/ advocates need not apply)

Blogger's Note: unlike the annual SGO programme ovarian cancer patient advocates need not apply (not welcome); survivor's course available for a fee

www.ccocr.org - Guest Speakers

Epigenetic modification and cancer: mark or stamp? (BRCA/fallopian tube....)

Epigenetic modification and cancer: mark or stamp?

Abstract

Hypotheses are built upon data, but data require hypotheses before they can be understood. The development of the ‘two-hit’ hypothesis of carcinogenesis was a key event in cancer genetics because it provided a testable model of how tumours develop. In this commentary on ‘Promoter hypermethylation patterns in Fallopian tube epithelium of BRCA1 and BRCA2 germline mutation carriers’ by Bijron et al. published in the February 2012 issue of Endocrine-Related Cancer, the need for new grammar and some new hypotheses in epigenetics is discussed. Meanwhile, data suggesting an important role of epigenetic modification in the cause, progression and treatment of cancer continues to accumulate............

Introduction

In hereditary tumours, the first hit occurs in the germ line, whereas in non-hereditary tumours, the first hit occurs in the cell from which the tumour arises. The second hits are always somatic, and can inactivate the second allele in various different ways. The development of the ‘two-hit’ hypothesis of carcinogenesis was a key event in cancer genetics because it provided a testable model of how tumours develop (Knudson 1971, 1978). Although there have been extensions and revisions to the basic model (Tomlinson et al. 2001), the essential elements of the basic hypothesis remain intact, 40 years on. In the original ‘test case’ of RB-1 mutations in retinoblastoma, these events were physical alterations in the structure of the chromosome or gene (Cavenee et al. 1983), and the perception was such that physical changes put a ‘stamp’ on the tumour that could be detected by examination of genomic DNA.............

continue to read full paper

paywalled: Sleep disturbance, cytokines, and fatigue in women with ovarian cancer.

Sleep disturbance, cytokines, and fatigue in women with ovarian cancer.

Abstract

Pro-inflammatory cytokines, such as interleukin-6 (IL-6), have been implicated in the underlying processes contributing to sleep regulation and fatigue. Despite evidence for sleep difficulties, fatigue, and elevations in IL-6 among women with ovarian cancer, the association between these symptoms and IL-6 has not been investigated. To address this knowledge gap, we examined relationships between sleep disturbance, fatigue, and plasma IL-6 in 136 women with ovarian cancer prior to surgery. These relationships were also examined in 63 of these women who were disease-free and not receiving chemotherapy 1 year post-diagnosis. At both time-points, higher levels of IL-6 were significantly associated with sleep disturbances (p<0.05), controlling for potentially confounding biological and psychosocial covariates. Higher IL-6 was significantly associated with fatigue prior to surgery (p<0.05); however, when sleep disturbance was included in the model, the relationship was no longer significant. IL-6 was not significantly associated with fatigue at 1 year. Changes in sleep over time were significantly associated with percent change in IL-6 from pre-surgery to 1 year, adjusting for covariates (p<0.05). These findings support a direct association of IL-6 with sleep disturbances in this population, whereas the relationship between IL-6 and fatigue prior to surgery may be mediated by poor sleep. As this study is the first to examine cytokine contributions to sleep and fatigue in ovarian cancer, further research is warranted to clarify the role of biological correlates of sleep and fatigue in this population.

The Healthcare Blog: Will Regina Holliday Become Health Care’s Rosa Parks?

Blogger's Note:  the outcome/s of these issues/activities will have international implications with a direct/indirect application to the 99%/1% movements in the recent past
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Will Regina Holliday Become Health Care’s Rosa Parks?:

By Michael L. Millenson

The protest organized by Regina Holliday over a patient’s right to access their medical information is not quite the same magnitude as agitating for integration in 1950s-era Alabama. Yet there are intriguing similarities between the crusade Rosa Parks launched then and what Holliday is attempting today. Both involve a refusal to accept second-class status and a resolve to push back against entrenched institutions.
Parks’ story is well known. Her refusal to surrender her seat to a white male passenger on a Montgomery city bus in December, 1955, prompted her arrest and a sustained bus boycott by outraged black residents. That boycott’s success propelled a young Martin Luther King, Jr. to the forefront of the fight against segregation. Parks eventually came to be known as the “mother of the modern day civil rights movement.”
Holliday’s protest is seeking media attention – as this is written, it had not taken place – by targeting the American Hospital Association’s annual meeting at a Washington hotel. The rights issue involves how quickly patients are able to see their own electronic medical information after leaving the hospital. The AHA, representing an industry that grew up as “the physician’s workshop,” wants a 30-day grace period to give doctors more time to prepare and review material. Holliday demands immediate access.
What makes this a fight about freedom, and not just fodder for the Federal Register, is its profound potential to affect how each of us takes responsibility for our own health and health care in the digital information age. What is most likely to capture the general public’s interest, however, is the way that general principle finds emotional resonance in Holliday’s personal story.
A widow with two young children, Holliday recalls on her blog how her husband, Fred, died “painfully [from cancer] after suffering for weeks.” She blames inadequate pain management and uncoordinated care due to a chaotic medical record. When they sought access to his electronic medical record, the hospital responded by saying “we must wait 21 days and pay 73 cents per page to see the story of his care. Then they told us we could go home to die.”
Just as Rosa Parks was not a random bus passenger – she and her husband, Raymond, were active members of the NAACP – Holliday is not a random patient protester. An artist, she responded to Fred’s death by becoming a “patients right arts advocate,” producing paintings with titles like “73 Cents,” and “Hubris Hospital” and “Give Us Our Damned Data.”
Also like Parks, Holliday is part of a larger community that shares a similar outrage over being relegated to the back seat, even if in the doctor- and hospital-dominated world of health care, the “back of the bus” is symbolic rather than literal. Her protest drew expressions of support from the National Partnership for Women & Families, the Center for Democracy and Technology and others. But the key to whether this protest is a turning point may lie in a phrase used in a letter supporting immediate access from the Society for Participatory Medicine, to which Holliday belongs. (Disclosure: I’m a Society board member and a friend of Holliday’s, but did not draft the comments.)

The Society wrote: “The overarching principle with respect to patient access to electronic health record data…should be: ‘Nothing about me, without me.’”

That phrase comes from a health care conference held in Salzburg, Austria in the late 1990s. It echoes the slogan, “Nothing about us without us” popularized by disability activists in South Africa and then adopted by activists in this country. It is a powerful statement about equality, engagement and control of one’s own destiny even when those who do not want to share control do so with the best of intentions, whether seeking to help the disabled or trying to implement electronic medical records in hospitals.

The problem, as The Silent World of Doctor and Patient defined it so insightfully more than a quarter-century ago, is that many providers genuinely believe it is their duty to act as “rational agents” on the patient’s behalf without asking the patient’s opinion. In contrast, “nothing about me without me” is the patient’s demand for freedom and, yes, the responsibility that comes with it.

That demand is not unprecedented. I’ve written how new moms were given strict baby feeding schedules by pediatricians until Dr. Benjamin Spock declared that mothers deciding when to feed their babies was “was used by the entire human race until the turn of the century.” How the first American Medical Association code of ethics required patients to obey their doctors, and how it required repeated lawsuits by patients before doctors had to tell patients in clear language the risks as well as benefits of a procedure. And how the AHA, facing the threat of legislation, adopted a Patient Bill of Rights that included such privileges as being told the names of all the doctors treating you.

What distinguishes Holliday’s effort is the power of information access in the digital age. “Give us our damned data” means possessing the raw clinical material that lets us partner with our own doctors or choose other clinicians who better meet our needs. We can go “off the grid,” perhaps “crowdsourcing” questions to others, or we can apply that digitized information to treatment recommendations and outcome prediction algorithms based on the same evidence our doctor uses.

Demanding access to our digitized information immediately, rather than when it is convenient for the doctor and hospital to give it to us, is a stark declaration that it is our health and our lives that are immediately at stake: “Nothing about me without me” from our first cry for food on the day we are born and then every day after.

This dispute may soon be forgotten as a kerfuffle over criteria for “Stage 2 meaningful use” subsidies from the Department of Health and Human Services. But if it can ignite an understanding about what takes for us to be true equals in health and health care decisions, it could be the start of a mass movement that would make Rosa Parks proud.

Michael Millenson is a Highland Park, IL-based consultant, a visiting scholar at the Kellogg School of Management and the author of “Demanding Medical Excellence: Doctors and Accountability in the Information Age.

Survey: doctoral thesis - Personal Health Record System Survey (international survey/anonymous)

Blogger's Note: although many patients/consumers may agree/disagree with the use of the term 'chronic' as it applies to cancer, it is one way to voice your opinions should you choose to do so
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Survey

PERSONAL HEALTH RECORD SYSTEM SURVEY

The following pages contain an anonymous questionnaire, which we invite you to complete.

This questionnaire was developed as part of a doctoral thesis at HEC Montréal on the following topic: "The role of personal health records in the improvement of healthcare services for individuals with chronic diseases".

Not only will your participation be greatly appreciated, but it may also be beneficial for improving healthcare services for individuals with chronic diseases.

Please answer the questions included in this questionnaire without hesitation, because generally, your first impressions best reflect your true opinions. There is no time limit for completing the questionnaire, although we have estimated that it should take about 30 to 45 minutes.

The information gathered is anonymous and shall remain strictly confidential. It will be used only to advance knowledge and for the dissemination of the overall results at academic or professional forums and thought publications. The information collected for this research project can be utilized in further studies about personal health records and chronic care.

You are completely free to refuse to participate in this project and you may decide to stop answering the questions at any time. If you do not want to answer to a particular question, simply stop answering this questionnaire, which will put an end to your participation to this study. Completing this questionnaire will be considered as your consent to participate in our research project.

If you have any questions about this research, please contact the senior researcher, Dr. Chekli, at the telephone number or email address indicated below.

The research ethics committee of HEC Montréal has determined that the collection of data linked to the present study meets the ethics standards for research involving human subjects. If you have any questions related to ethics, please contact the committee secretary at 1-514-340-7182 or at cer@hec.ca

Thank you very much for your participation.


Mohamed Chekli, MD, MSc eng.
Ph. D. Candidate - Administration
HEC Montréal
1-514-739-2502
mohamed.chekli@hec.ca

Albert Lejeune, PhD
Titular Professor
Université du Québec à Montréal
1-514-987-3000 (#4844)
lejeune.albert@uqam.ca

Francois Bellavance, PhD
Titular Professor
HEC Montréal
1-514-340-6485
francois.bellavance@hec.ca

U.S. Hospital Association (AHA) Fights Digital Data Access for Patients | Center for Democracy & Technology

Hospital Association Fights Digital Data Access for Patients | Center for Democracy & Technology

Forbes: (U.S.) Hospital Association "Declares War" on Patient Empowerment

 Blogger's Note: click on the pdf link for letter from AHA (as below):

"A firestorm has been triggered by the American Hospital Association’s (AHA) 68 page letter (PDF) commenting on the Stage 2 Meaningful Use proposed requirements."
 "Our members are particularly concerned with the proposed objective to provide patients with the ability to view, download and transmit large volumes of protected health information via the Internet (a “patient portal”). The AHA believes that this objective is not feasible as proposed, raises significant security issues, and goes well beyond current technical capacity. We also believe that CMS should not include this objective because the Office of Civil Rights, and not CMS, regulates how health care providers and other covered entities fulfill their obligations under the Health Insurance Portability and Accountability Act (HIPAA), including the obligation to give patients access to their health records. Please see our detailed comments for more
recommendations on changes to specific objectives and measures."

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Hospital Association "Declares War" on Patient Empowerment:

A firestorm has been triggered by the American Hospital Association’s (AHA) 68 page letter (PDF) commenting on the Stage 2 Meaningful Use proposed requirements. The reaction has been swift from various individuals and organizations focused on patient rights and empowerment.

Consumer Rights and Patient Empowerment Organizations also weighed in.

• The Center for Democracy & Technology picked apart the legal “hail mary” that the AHA was using in their response. See Hospital Association Fights Digital Data Access for Patients for more.
• The Society for Participatory Medicine stated the following. “Patient engagement is the cornerstone of a successful, cost effective, and high-quality health care system,” said Daniel Z. Sands, MD, the Society’s president and a practicing internist. “Those goals cannot be achieved unless we give patients access to their own health information and encourage them to use it.”