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Journeying Beyond Breast Cancer
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Rescooped by Marie Ennis-O'Connor from Websalute, e-santé, e-health, #hcsmeuit
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Cancer survivor 'e-Patient Dave' has a bit of advice for all of us - New Haven Register

Cancer survivor 'e-Patient Dave' has a bit of advice for all of us
New Haven Register
“Healthcare is not a spectator sport,” according to “e-Patient Dave” a cancer survivor and fascinating speaker and author.

Via Lionel Reichardt / le Pharmageek, Giovanna Marsico
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Giovanna Marsico's curator insight, October 7, 2013 6:18 AM

In answer to some experts who say, “Patients don’t understand this stuff,” Dave responds, “It’s perverse to keep people in the dark and then call them ignorant.”

irissorg's curator insight, October 28, 2013 2:43 AM

Dave is  part of a group that started the Society for Patient Participatory Medicine (http://participatorymedicine.org/).  See him on TED.com/Dave. Patient participation should: Improve outcomes, reduce medical error, increase patient satisfaction and reduce costs

David Dellamonica's curator insight, October 28, 2013 11:48 AM

e-patient Dave is incredible.....

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Speak Up: 8 Words & Phrases to Ban in Oncology! : Oncology Times

Speak Up: 8 Words & Phrases to Ban in Oncology! : Oncology Times | Journeying Beyond Breast Cancer | Scoop.it

As an oncologist, if I had to come up with something that our field should get rid of, it would be our language, or more specifically, the often imprecise, obscure, and baffling word choices that permeate our consultation notes and other communications.

Marie Ennis-O'Connor's insight:

Dr Robert Miller on what not to say about cancer 

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Being Invisible Girls

Being Invisible Girls | Journeying Beyond Breast Cancer | Scoop.it
What would you do if you were seated on a crowded subway and saw a little girl falling asleep standing up? “I think: someone needs to hold that little girl because she’s sleepy.  And all of a sudde...
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Six stubborn myths about cancer

Six stubborn myths about cancer | Journeying Beyond Breast Cancer | Scoop.it
David Robert Grimes: The internet is awash with misinformation about cancer, with potentially tragic consequences for patients
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The OpenNotes project goes wide: a million patients and families enabled by information! | e-Patients.net

The OpenNotes project goes wide: a million patients and families enabled by information! | e-Patients.net | Journeying Beyond Breast Cancer | Scoop.it
Updated Sept. 6: I'd forgotten that as we posted in June, Cleveland Clinic announced open access too, adding a half million patients to the total. Big news
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Improving the experience of cancer patients

Improving the experience of cancer patients | Journeying Beyond Breast Cancer | Scoop.it

Macmillan’s new report ‘Improving Care for People with Cancer: putting cancer patient experience at the heart of the NHS‘ calls for every person diagnosed with cancer to be treated with dignity and respect throughout their cancer journey.  However, the sad reality is that many people have a poor experience of care as shown in the latest results of the National Cancer Patient Experience Survey.  

 

The survey provides insights into the care and treatment experienced by cancer patients in155 NHS Hospital Trusts across England, including some patients:

Not fully understand their diagnosisNot being asked their preferred name they wanted to be called byPeople treating and caring for them not always working well togetherNot being given written information on their condition or their operationFeeling they are not involved in decisions about their treatment

The new report calls on the Government and the NHS to ensure that cancer patient experience has the same weight as clinical effectiveness and patient safety. It also urges the NHS to deliver coordinated and improved communication between staff and patients.


Via Andrew Spong
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Do You Live Longer If You Are Married?

Do You Live Longer If You Are Married? | Journeying Beyond Breast Cancer | Scoop.it

According to a recent study, published in The Journal of Clinical Oncology,  cancer patients who are married live longer than single people who have the disease.

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Physician preferences and attitudes regarding different models of cancer survivorship care: a comparison of primary care providers and oncologists

Physician preferences and attitudes regarding different models of cancer survivorship care: a comparison of primary care providers and oncologists | Journeying Beyond Breast Cancer | Scoop.it

New strategies for delivering cancer follow-up care are needed. We surveyed primary care providers (PCPs) and oncologists to assess how physician attitudes toward and self-efficacy with cancer follow-up affect preferences for different cancer survivorship models

Marie Ennis-O'Connor's insight:
Conclusions and Implications for Cancer Survivors

PCPs and oncologists have different preferences for models of cancer survivorship care. Prior involvement with cancer surveillance was one of the strongest predictors of PCPs’ willingness to assume this responsibilit

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Fear drives young cancer patients to needless mastectomies

Fear drives young cancer patients to needless mastectomies | Journeying Beyond Breast Cancer | Scoop.it
More and more, young women with cancer in one breast are opting to have the healthy breast removed, despite knowing that it will likely not improve chances of survival.
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A Tale of Two Women, HER2-Positive Breast Cancer, and Clinical Trials | ASCO Connection

A Tale of Two Women, HER2-Positive Breast Cancer, and Clinical Trials | ASCO Connection | Journeying Beyond Breast Cancer | Scoop.it

“People who participate in clinical trials are not guinea pigs. They are trailblazers! Partners as we fight for better. 

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Large Study Documents: No Increased Risk for Pregnant Women... : Oncology Times

Large Study Documents: No Increased Risk for Pregnant Women... : Oncology Times | Journeying Beyond Breast Cancer | Scoop.it

Overall survival rates are similar in pregnant women with breast cancer and in nonpregnant women with the disease when both groups receive the same treatment, results from an international study have shown (JCO 2013;31:2532-2539).

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Janne M. Rodsten's curator insight, February 6, 1:22 AM

....except pregnant women are often diagnosed much later than non-pregnant women, an added risk factor in itself of course...

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Helping Doctors and Patient Make Sense of Health Statistics

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Online tools may boost breast cancer patients' mood

Online tools may boost breast cancer patients' mood | Journeying Beyond Breast Cancer | Scoop.it
Women with breast cancer who created a personal website about their health reported feeling less depressed, more positive and having a greater appreciation for life in a small new study.

Via Susan Zager
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Susan Zager's curator insight, August 30, 2013 12:18 PM

Here's another article talking about how personal websites for breast cancer helps women feel less depressed. To see the abstract of the study go to:

 

Natalie Palmer's curator insight, August 31, 2013 5:40 AM

This makes sense as it gives women another way to feel supported on their journey and know we are not alone.

Tambre Leighn's curator insight, August 31, 2013 12:39 PM

Taking action, writing out your feelings, creating = positive energy and shift in focus...always great to look at new tools!

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How to read articles about health and healthcare - Health News - NHS Choices

How to read articles about health and healthcare - Health News - NHS Choices | Journeying Beyond Breast Cancer | Scoop.it
Nine simple tips on how to read health news
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Heather Swift's curator insight, October 9, 2013 5:39 PM
How to read articles about health and healthcare
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Innovation for a Sustainable Healthcare How can patients improve their own healthcare?

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Viewing Laboratory Test Results Online: Patients’ Actions and Reactions | Journal of Participatory Medicine

Viewing Laboratory Test Results Online: Patients’ Actions and Reactions | Journal of Participatory Medicine | Journeying Beyond Breast Cancer | Scoop.it
This study of more than 1,500 patients who used a patient portal found that they are usually relieved, appreciative, satisfied, or even happy to view their lab test results online.
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Depression in cancer patients: What you should know - Cancerwise | Cancer blog from MD Anderson Cancer Center

Depression in cancer patients: What you should know - Cancerwise | Cancer blog from MD Anderson Cancer Center | Journeying Beyond Breast Cancer | Scoop.it

Depression is a serious illness that can have a major impact on an individual's quality of life. In fact, 15-25% of people diagnosed with cancer also suffer from depression. This is more than double that of the general population. 

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Marie Ennis-O'Connor's comment, October 3, 2013 3:50 AM
Pascal, ce rapport parle de la dépression après un cancer
Giovanna Marsico's comment, October 3, 2013 9:17 AM
Oui, il parle de la dépression comme effets collatéral de la maladie et des traitements, non comme facteur oncogène.
Heather Swift's curator insight, October 9, 2013 5:40 PM

Depression is a serious illness that can have a major impact on an individual's quality of life. In fact, 15-25% of people diagnosed with cancer also suffer from depression. This is more than double that of the general population.

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Understanding the drivers of the patient experience

Understanding the drivers of the patient experience | Journeying Beyond Breast Cancer | Scoop.it

Satisfying patients is increasingly important, but figuring out how to do so is a challenge.

 

Many hospitals, including the Cleveland Clinic, are implementing a variety of strategies to improve the patient experience —an issue that’s rapidly becoming a top priority in health care. The Accountable Care Act now links performance related to patient-experience metrics to reimbursement. For the first time, the pay of hospitals and eventually individual providers will be partly based on how they are rated by patients.

 

Few disagree on the importance and the need to be more patient centric, but what exactly is the “patient experience”?


Via Andrew Spong
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Andrew Spong's curator insight, September 27, 2013 2:04 AM

This is the sort of analysis that gives the sorely abused phrase 'patient focused' meaning. Good to see.

rob halkes's curator insight, October 2, 2013 5:17 AM

Read the blog: it is insightful and instructive!
- Patient experience is not what "we" think "they" need!

- The grade of how much care has rendered a patient desired outcome may influence its evaluation (actual results - felt results - feelings about one has been engaged)

- Is the patient a "personalization" of "an" (patient's) category

- Does the patient get, have, been given, ways to communicate, interact and review

etc...

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Analysis Suggests Mindfulness Improves Mental Health After Breast Cancer

Analysis Suggests Mindfulness Improves Mental Health After Breast Cancer | Journeying Beyond Breast Cancer | Scoop.it

A type of mindfulness meditation has a moderate to large positive impact on the mental health of women affected by breast cancer, a recent analysis published in Psycho-Oncology suggests.  Researchers examined data from several published studies to determine the effectiveness of mindfulness-based stress reduction (MBSR)—a kind of focused, non-judgmental attention on the present—at reducing stress, anxiety, and depression in persons diagnosed with breast cancer.

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Health News - Simple 2-Question Survey Accurately Screens Cancer Patients for Depression

Health News - Simple 2-Question Survey Accurately Screens Cancer Patients for Depression | Journeying Beyond Breast Cancer | Scoop.it
Simple 2-Question Survey Accurately Screens Cancer Patients for Depression
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Understanding and Dissecting Your Breast Cancer Pathology Report

Understanding and Dissecting Your Breast Cancer Pathology Report | Journeying Beyond Breast Cancer | Scoop.it
Your pathology report is an important document in the process of making your diagnosis. It's written in very technical terms, but here's a guide to understanding that all those big words and medical jargon means.
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What Does The Future Hold For The Treatment Of Breast Cancer?

What Does The Future Hold For The Treatment Of Breast Cancer? | Journeying Beyond Breast Cancer | Scoop.it

In a keynote lecture during the 2013 Breast Cancer Symposium breast cancer expert and ASCO Past President George Sledge, MD, offered five predictions for the future of the medical management of breast cancer. Dr. Sledge is now Chief of Oncology at Stanford University School of Medicine, Palo Alto, California.

Marie Ennis-O'Connor's insight:

Key Points:HER2-positive breast cancer will cease to be a public health issue once the 3-year disease-free survival benchmark of 92% is passed.BRCA testing will become widespread, resulting in more imaging, more prophylactic surgery, and a modest reduction in systemic treatment.Targeting proliferation and survival pathways will continue to be important.Cancer genomics will become ubiquitous, but this will create new obstacles for oncologists.Novel ways of targeting dormant micrometastases will need to be addressed.

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Mammogram Debate: Why Breast Cancer Risks are Higher for Younger Women

Mammogram Debate: Why Breast Cancer Risks are Higher for Younger Women | Journeying Beyond Breast Cancer | Scoop.it

The age at which women should begin to get mammograms and with what frequency is at the heart of the controversy. 

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The hubris of medicine has to end

The hubris of medicine has to end | Journeying Beyond Breast Cancer | Scoop.it
What keeps popping into my head is the hubris of medicine. As I grow older, the excessive pride of the medical establishment becomes more obvious.
Marie Ennis-O'Connor's insight:

An important read for patients and clinicians alike!

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New Procedures Help Pediatric Cancer Patients With Future Fertility

New Procedures Help Pediatric Cancer Patients With Future Fertility | Journeying Beyond Breast Cancer | Scoop.it
With survival rates on the rise, more kids with cancer are undergoing new fertility-preservation procedures to help improve their future childbearing prospects.
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