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Journeying Beyond Breast Cancer
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Navigating uncharted waters: a guide to shared decision making - Patient-Voice

Navigating uncharted waters: a guide to shared decision making - Patient-Voice | Journeying Beyond Breast Cancer | Scoop.it
The principle of involving patients in decisions about their own care is no longer very controversial.
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Living With Cancer: Tumbling Blocks

Living With Cancer: Tumbling Blocks | Journeying Beyond Breast Cancer | Scoop.it
Three of my former graduate students have received a cancer diagnosis. Why are these people so young, and why are there so many? This cannot, should not, be happening to my students.
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theresa berry's curator insight, January 10, 9:45 AM

 i know a lot of kids my age or friends that have been fine one day and the next they are slowly dying of cancedr and the doctors still dont know why or how they didnt detact the cancer before it got to the point of not being able to be a high school student like they planned and that the sad thing.

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Survivors Didn't Get Hung Up on Surgical Drains

Survivors Didn't Get Hung Up on Surgical Drains | Journeying Beyond Breast Cancer | Scoop.it
Breast Cancer survivors create Surgical Drain Holders Designed For Comfort.
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Easing patients transition to survivorship

Easing patients transition to survivorship | Journeying Beyond Breast Cancer | Scoop.it
Survivorship plans should be based on patients answers to these basic questions about their goals and wishes after treatment ends.
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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.

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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

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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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Yoga Enhances Sleep Quality in Cancer Survivors

Yoga Enhances Sleep Quality in Cancer Survivors | Journeying Beyond Breast Cancer | Scoop.it
Cancer survivors with sleep issues who participated in a yoga program reported better sleep quality and less reliance on sleep medications, researchers found.
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Genetic Testing

Genetic Testing | Journeying Beyond Breast Cancer | Scoop.it

Genetic testing is the analysis of genes, chromosomes, or proteins to help predict the risk of disease, identify carriers (individuals who do not have the disease but have a copy of the disease gene) of disease, diagnose disease, or determine the likely course of a disease. More than 900 genetic tests are available for many different diseases, including breast, ovarian, colon, thyroid, and other cancers.

Genetic testing for cancer risk is sometimes called predictive testing, which means that it can help predict the likelihood that an individual will develop cancer in his or her lifetime. No genetic test can report with 100% certainty that a person will develop cancer, but the tests can tell a person if he or she has a higher risk of developing cancer than the general population. Not everyone with a cancer-predisposition gene will develop cancer. For example, a woman with a 75% chance of developing breast cancer may remain healthy, while a woman with a 25% chance of developing breast cancer may eventually develop cancer.

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Key Messages:

Genetic testing helps predict the likelihood that a person will develop a disease, including some types of cancer.Genetic testing is a personal decision with many factors to consider.Anyone who decides to undergo genetic testing should receive genetic counseling before and after the test is performed.

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Positive personal growth following breast cancer diagnosis

Positive personal growth following breast cancer diagnosis | Journeying Beyond Breast Cancer | Scoop.it
Although being diagnosed with breast cancer is usually an extremely stressful experience for most women, a new study by researchers has found that there also can be unexpected benefits.
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Dr Danny Sands Interview On Doctor Patient Relationships

Dr Danny Sands Interview On Doctor Patient Relationships | Journeying Beyond Breast Cancer | Scoop.it

Dr. Danny Sands, Practicing Physician and Authority on Healthcare Transformation

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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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