Showing posts with label patients. Show all posts
Showing posts with label patients. Show all posts
Saturday, July 6, 2019
Hashtag Collections and Communities - JCOCCI Article
I am so pleased to have co-authored and to have the #gyncsm community and chat be a part of a newly published article in the JCO Clinical Cancer Informatics journal.
Saturday, June 8, 2019
#ASCO19 Opening Session - Focus on Patients
The theme of this year's ASCO Annual meeting was
I was moved by the dedication of the over 40,000 health care providers -surgeons, oncologists, nurses, social workers, and researchers from around the globe who attended the meeting to learn how to improve cancer patient care. Thank you to each and every one of them.
Dee
Every Day is a Blessing!
Caring For Every Patient, Learning From Every Patient
This theme was exhibited in many sessions I attended and highlighted in the Opening Session starting with Dr Bertagnolli, in her President's Address.You may read her complete speech at
https://connection.asco.org/blogs/2019-presidential-address-caring-every-patient-learning-every-patient?cid=DM1990&bid=15208062
https://connection.asco.org/blogs/2019-presidential-address-caring-every-patient-learning-every-patient?cid=DM1990&bid=15208062
First up @ASCOPres announcing mCODE: open source, free data standards that will allow for easier collection of EHR data....the same language for EHRs and the ability to communicate between platforms. This is big for #interoperability #ASCO19 pic.twitter.com/NhNcvBH5Bu— Amanda Narod (@AmandaBinDC) June 1, 2019
— Dee Sparacio (@womenofteal) June 1, 2019Dr Ang, a medical oncologist from Aukland, New Zealand spoke next.
Having read two books Dr Atul Gawande wrote, I was thrilled to be able to hear him in person.Thank you Dr Ang for your presentation “Chemoboy” and for thanking patients , caregivers, researchers and those who work behind the scenes. “what is the most important thing in the world -the people “ #gyncsm #ASC019 pic.twitter.com/XOPQsk5v4A— Dee Sparacio (@womenofteal) June 1, 2019
As I heard these next words I thought of how it matched with what I would be saying later that afternoon in the Fireside Chat with Dr Dickson.You can serve a patient’s quality of life and quantity of life, #ASCO19 @Atul_Gawande— Dee Sparacio (@womenofteal) June 1, 2019
Yes patients have goals and priorities! #gncsm #ASCO19— Dee Sparacio (@womenofteal) June 1, 2019
Less then a quarter of the time physicians don’t ask! @Atul_Gawande
It was a privilege to speak at this year's ASCO meeting and Tweet from the meeting.Palliative care can make a difference . @DanaFarber study. @Atul_Gawande #ASCO19 pic.twitter.com/JsbSc8dce3— Dee Sparacio (@womenofteal) June 1, 2019
I was moved by the dedication of the over 40,000 health care providers -surgeons, oncologists, nurses, social workers, and researchers from around the globe who attended the meeting to learn how to improve cancer patient care. Thank you to each and every one of them.
Dee
Every Day is a Blessing!
Sunday, September 11, 2016
Book Review: Making Sense of Medicine
During the 9 years I have written this blog I have read and reviewed a number of books by cancer patients, their caregivers and their physicians. The focus of these books has always been cancer. During that time period I have also promoted the need for more patient-centered care. My definition of patient centered care is treating the person not the disease based on the individual patient's needs and situation.
When Dr. Zachary Berger, ( @ZackBergerMDPhD), a physician at Johns Hopkins, who I follow on Twitter, tweeted that he had published a new book, Making Sense of Medicine- Bridging the Gap Between Doctor Guidelines and Patient Preferences I was interested in reading it. I wondered how he would describe the importance of patient-centered care from his, a physician's, perspective.
His book contains chapters on various common chronic diseases - High Blood Pressure, Arthritis and Diabetes. Within each chapter is the story of his patient's experience with illness and his interactions with those patients. Some of those interactions were funny and after reading some I was angry at the situation. I could identify with some of the stories as patients with multiple diseases dealt with the system. Although there is not a separate section for or about those living with cancer there are chapters that are useful to the cancer patient and survivor such as Depression, Surgery, Guidelines and Is Half of all Research Wrong?.
His chapter on Poverty : Making Decisions, Our Health System - And You in the Middle is very thought provoking and points out the health care disparities in the United States. Berger writes " we don't get the right treatments to exactly the right person just when and where they need it ." He goes on to say "And giving too much care is a subset of this problem."
As I read the book I underlined many phrases and paragraphs.
When I read "...The biomedical assumption that knowing what is broken will tell us how to fix it is not always justified". I thought of a friend who turned down a spinal tap to see if there was cancer in her brain because she had decided to stop treatment.
When speaking of guidelines Berger says " there is no perfect evidence that matters the same way to everyone, everywhere". That is why asking patients their needs and wants is so important.This section is the only one in which I would add that ASCO (American Society of Clinical Oncology) is including patients on all their Clinical Guideline Panels and they are having a voice as those guidelines are developed.
Reading "There will always be such situations in which the personal question outpaces the available scientific evidence." I thought of cancer patients with multiple recurrences / metastatic disease with different treatment options available to them and being in uncharted waters.
In Revisiting the Biomedical Paradigm he writes"Identifying conditions (diseases) through signs , symptoms, following them up with diagnosis and pursuing effective treatment is not the only effective path to help . " He recommends a more sensible approach "science of the individual". Yes!
I could go on but I would prefer that you read the book and find the sections that speak to you and an individual patient, doctor or caregiver .
If you are a patient, caregiver or health care provider I highly recommend Making Sense of Medicine. It will make all of you think. Patients, I hope it empowers you to ask questions and become a partner in your health care.
I appreciate the opportunity to read and review this book.
Dee
Every Day is a Blessing!
When Dr. Zachary Berger, ( @ZackBergerMDPhD), a physician at Johns Hopkins, who I follow on Twitter, tweeted that he had published a new book, Making Sense of Medicine- Bridging the Gap Between Doctor Guidelines and Patient Preferences I was interested in reading it. I wondered how he would describe the importance of patient-centered care from his, a physician's, perspective.
His book contains chapters on various common chronic diseases - High Blood Pressure, Arthritis and Diabetes. Within each chapter is the story of his patient's experience with illness and his interactions with those patients. Some of those interactions were funny and after reading some I was angry at the situation. I could identify with some of the stories as patients with multiple diseases dealt with the system. Although there is not a separate section for or about those living with cancer there are chapters that are useful to the cancer patient and survivor such as Depression, Surgery, Guidelines and Is Half of all Research Wrong?.
His chapter on Poverty : Making Decisions, Our Health System - And You in the Middle is very thought provoking and points out the health care disparities in the United States. Berger writes " we don't get the right treatments to exactly the right person just when and where they need it ." He goes on to say "And giving too much care is a subset of this problem."
As I read the book I underlined many phrases and paragraphs.
When I read "...The biomedical assumption that knowing what is broken will tell us how to fix it is not always justified". I thought of a friend who turned down a spinal tap to see if there was cancer in her brain because she had decided to stop treatment.
When speaking of guidelines Berger says " there is no perfect evidence that matters the same way to everyone, everywhere". That is why asking patients their needs and wants is so important.This section is the only one in which I would add that ASCO (American Society of Clinical Oncology) is including patients on all their Clinical Guideline Panels and they are having a voice as those guidelines are developed.
Reading "There will always be such situations in which the personal question outpaces the available scientific evidence." I thought of cancer patients with multiple recurrences / metastatic disease with different treatment options available to them and being in uncharted waters.
In Revisiting the Biomedical Paradigm he writes"Identifying conditions (diseases) through signs , symptoms, following them up with diagnosis and pursuing effective treatment is not the only effective path to help . " He recommends a more sensible approach "science of the individual". Yes!
I could go on but I would prefer that you read the book and find the sections that speak to you and an individual patient, doctor or caregiver .
If you are a patient, caregiver or health care provider I highly recommend Making Sense of Medicine. It will make all of you think. Patients, I hope it empowers you to ask questions and become a partner in your health care.
I appreciate the opportunity to read and review this book.
Dee
Every Day is a Blessing!
Tuesday, July 22, 2014
Elixir Fund Registry- A Patient / Caregivers Wish List
Just about four years ago at a Mercer County Cancer Coalition (now called the Hunterdon/Mercer Chronic Disease Coalitio) meeting I meeting Meg McQuarrie from the Elixir Fund.
The Elixir Fund "provides comfort and support to cancer patients and their caregivers. "Their goal is to reduce the stress of treatment and provide support to patients and their caregivers so they can take a break from cancer. They get their inspiration from the cancer journey of Meg's brother, Kevin.
Yesterday, Meg and I met to discuss the latest project of the Fund- the Elixir Fund Registry. This project, similar to a bridal registry, is a way for family and friends to provide support ( emotional and physical) to their loved ones who are in treatment as well as their caregivers. Patients and caregivers can make a wish list for things they would love to have or things they would like to do to make their treatment time easier. The items on the list are varied from a massage, to meals delivered to a patients home, help with putting on makeup, transportation to appointments, yoga classes or it can be a custom wish. Many local businesses have agreed to help with providing the services. The registry will be online and initially will involve cancer patients/ caregivers who reside in NJ.
The Elixir Fund Registry is ready to be tested and the Fund is looking for people who have experience as a cancer patient, caregiver or health care provider ( such as a nurse or social worker) to test out the site and provide feedback to the Fund so they can insure that the program meets the needs of cancer patients and caregivers. I am so happy to see a patients centered approach to designing the program. Program testing is supported by Eli Lilly.
Meg allowed me to do a test run of the Registry and it is easy to set up and use.
Please contact Meg by calling 800-494-9228 or e-mailing her at meg@elixirfund.org
Dee
Every Day is a Blessing!
The Elixir Fund "provides comfort and support to cancer patients and their caregivers. "Their goal is to reduce the stress of treatment and provide support to patients and their caregivers so they can take a break from cancer. They get their inspiration from the cancer journey of Meg's brother, Kevin.
Yesterday, Meg and I met to discuss the latest project of the Fund- the Elixir Fund Registry. This project, similar to a bridal registry, is a way for family and friends to provide support ( emotional and physical) to their loved ones who are in treatment as well as their caregivers. Patients and caregivers can make a wish list for things they would love to have or things they would like to do to make their treatment time easier. The items on the list are varied from a massage, to meals delivered to a patients home, help with putting on makeup, transportation to appointments, yoga classes or it can be a custom wish. Many local businesses have agreed to help with providing the services. The registry will be online and initially will involve cancer patients/ caregivers who reside in NJ.
The Elixir Fund Registry is ready to be tested and the Fund is looking for people who have experience as a cancer patient, caregiver or health care provider ( such as a nurse or social worker) to test out the site and provide feedback to the Fund so they can insure that the program meets the needs of cancer patients and caregivers. I am so happy to see a patients centered approach to designing the program. Program testing is supported by Eli Lilly.
Meg allowed me to do a test run of the Registry and it is easy to set up and use.
Please contact Meg by calling 800-494-9228 or e-mailing her at meg@elixirfund.org
Dee
Every Day is a Blessing!
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