Closing perception gaps between patients and their caregiversInspire
This session at the Stanford University School of Medicine "Medicine X 2013" conference examined the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman, and from Aanand Naik, MD. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We discussed several studies, including a survey that Inspire conducted in 2012 in collaboration with Novartis, illustrating this gap: "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials."
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
Inspire CEO Brian Loew presents "Strategies and Tactics to Leverage Social and Digital Media in Clinical Research," at the 2014 conference of the Drug Information Association (DIA) in San Diego, CA.
The "Pulmonary Fibrosis Patient/Caregiver Experience Survey" explored the experiences of people affected by pulmonary fibrosis. Inspire conducted the survey in cooperation with its partner, the Pulmonary Fibrosis Foundation (PFF). Inspire CEO Brian Loew presented the findings during the PFF Summit in Nov. 2015 in Washington, DC.
Metastatic Breast Cancer Awareness Day: Special Event Webinarbkling
These slides accompany a conversation about living with metastatic breast cancer. Listen to the recording here: http://bit.ly/MBCTalk
Women with Stage IV disease talked about making treatment decisions, handling fear and anxiety, and living life as fully as possible.
Closing perception gaps between patients and their caregiversInspire
This session at the Stanford University School of Medicine "Medicine X 2013" conference examined the perception gap between patients and their spouses about severity of disease and suffering, with insights from a cancer patient, Maggie Heim, and her husband, Paul Hoffman, and from Aanand Naik, MD. Healthcare professionals need to be more attuned to the potential for a communications disconnect between a patient and his/her caregiver, which could lead to inadequate treatment. We discussed several studies, including a survey that Inspire conducted in 2012 in collaboration with Novartis, illustrating this gap: "Perceptions of stage IV NSCLC patients and caregivers regarding severity of symptoms and willingness to participate in supportive care trials."
Strategies and Tactics to Leverage Social and Digital Media in Clinical Rese...Inspire
Inspire CEO Brian Loew presents "Strategies and Tactics to Leverage Social and Digital Media in Clinical Research," at the 2014 conference of the Drug Information Association (DIA) in San Diego, CA.
The "Pulmonary Fibrosis Patient/Caregiver Experience Survey" explored the experiences of people affected by pulmonary fibrosis. Inspire conducted the survey in cooperation with its partner, the Pulmonary Fibrosis Foundation (PFF). Inspire CEO Brian Loew presented the findings during the PFF Summit in Nov. 2015 in Washington, DC.
Metastatic Breast Cancer Awareness Day: Special Event Webinarbkling
These slides accompany a conversation about living with metastatic breast cancer. Listen to the recording here: http://bit.ly/MBCTalk
Women with Stage IV disease talked about making treatment decisions, handling fear and anxiety, and living life as fully as possible.
Study: Hospice Comes too Late for Many AmericansDylan_Bates
Many Americans delay getting hospice care, if they receive any at all. In fact, Yale University researchers looked into medical records of more than 700 patients and found that only 40 percent took advantage of hospice care during the last year of their lives.
Removing the Barriers to Patient Engagement: Stanford MedX 2014CareSync Plus
CareSync COO Amy Gleason talked to the Stanford MexX audience about removing barriers to patient engagement by connecting people with data to change the role they play in their healthcare.
Access to meaningful, useful, and easily shareable health information empowers patients by equipping them with the resources they need to feel confident in their healthcare.
Where’s the evidence that screening for distress benefits cancer patients?James Coyne
“The case against screening for distress.” A presentation delivered as part of an invited debate with Alex Mitchell at the International Psycho Oncology Conference, Rotterdam, November 7, 2013
Communication of prognosis has multiple barriers to achieve shared understanding between patient and clinician. In this slide deck designed for Hospice and Palliative Medicine fellows, I look at some key studies and applied techniques to best address talking about 'How long do I have, doc?'
This slide deck does not cover how to formulate a prognosis.
AN EYE OPENER
I am not telling you that you have to do this, I am nearly asking you to have an open mind and research the information I am providing.
Last week my husband and I had the opportunity to be part of the Annual Cancer Convention/Alternative therapies. We heard well-known medical doctors, clinical researchers, nutritionists and authors speak on prevention and control of cancer along with other diseases through nutrition, tests and non-toxic therapies.
For nearly seven years of research, since I was diagnosed with breast cancer stage 2 and I have always believed in non-toxic treatments. My husband and I both were struck with this disease and neither of us had surgery, chemo and radiation. To this day we are striving to educate others in the cause of managing a healthier lifestyle, for this is the first step to a cleaner life. Through opening others minds to what is out there, for them to see that you do not need chemicals and toxins to heal this disease.
By going to the convention, it just broadens our knowledge in just what is out there as far as products, assistance, and treatments. Here are some slides and pictures from this amazing three days of listening to speakers, talking to vendors and patients from all over.
REMEMBER THERE ARE NO MISTAKES JUST LESSONS.
TRUST YOUR SELF AND LOVE YOUR SELF.
WITH THIS ANYTHING IS POSSIBLE.
KNOWLEDGE IS POWER
Experts by experience 2014: A compilation of patients’ storiesInspire
Experts by experience 2014: A compilation of patients’ stories: A special report by Inspire, developed in cooperation with the Stanford University School of Medicine, featuring columns written by patients as part of a monthly series in Stanford University School of Medicine’s Scope medical blog.
Study: Hospice Comes too Late for Many AmericansDylan_Bates
Many Americans delay getting hospice care, if they receive any at all. In fact, Yale University researchers looked into medical records of more than 700 patients and found that only 40 percent took advantage of hospice care during the last year of their lives.
Removing the Barriers to Patient Engagement: Stanford MedX 2014CareSync Plus
CareSync COO Amy Gleason talked to the Stanford MexX audience about removing barriers to patient engagement by connecting people with data to change the role they play in their healthcare.
Access to meaningful, useful, and easily shareable health information empowers patients by equipping them with the resources they need to feel confident in their healthcare.
Where’s the evidence that screening for distress benefits cancer patients?James Coyne
“The case against screening for distress.” A presentation delivered as part of an invited debate with Alex Mitchell at the International Psycho Oncology Conference, Rotterdam, November 7, 2013
Communication of prognosis has multiple barriers to achieve shared understanding between patient and clinician. In this slide deck designed for Hospice and Palliative Medicine fellows, I look at some key studies and applied techniques to best address talking about 'How long do I have, doc?'
This slide deck does not cover how to formulate a prognosis.
AN EYE OPENER
I am not telling you that you have to do this, I am nearly asking you to have an open mind and research the information I am providing.
Last week my husband and I had the opportunity to be part of the Annual Cancer Convention/Alternative therapies. We heard well-known medical doctors, clinical researchers, nutritionists and authors speak on prevention and control of cancer along with other diseases through nutrition, tests and non-toxic therapies.
For nearly seven years of research, since I was diagnosed with breast cancer stage 2 and I have always believed in non-toxic treatments. My husband and I both were struck with this disease and neither of us had surgery, chemo and radiation. To this day we are striving to educate others in the cause of managing a healthier lifestyle, for this is the first step to a cleaner life. Through opening others minds to what is out there, for them to see that you do not need chemicals and toxins to heal this disease.
By going to the convention, it just broadens our knowledge in just what is out there as far as products, assistance, and treatments. Here are some slides and pictures from this amazing three days of listening to speakers, talking to vendors and patients from all over.
REMEMBER THERE ARE NO MISTAKES JUST LESSONS.
TRUST YOUR SELF AND LOVE YOUR SELF.
WITH THIS ANYTHING IS POSSIBLE.
KNOWLEDGE IS POWER
Experts by experience 2014: A compilation of patients’ storiesInspire
Experts by experience 2014: A compilation of patients’ stories: A special report by Inspire, developed in cooperation with the Stanford University School of Medicine, featuring columns written by patients as part of a monthly series in Stanford University School of Medicine’s Scope medical blog.
Treatment For Cancer - Alternative Cancer Treatment Options To Traditional Ca...Keith Loucks
This is a guide for those looking for alternative cancer treatment information. Treatment For Cancer - Alternative Options to Traditional Cancer Therapy
Strategies for Long-term Management of Recurrent Ovarian Cancerbkling
A panel of doctors and patients will discuss decision-making in the recurrent setting of ovarian cancer, including how to understand and consider options like chemotherapy, surgery, and clinical trials. Panelists include Dr. Jason Wright and Dr. June Hou from Columbia University College of Physicians and Surgeons, survivor/research advocate Annie Ellis, and others living with recurrence.
In this webinar, Dr. Angela Nicholas, Dr. Chris Heery, and Wenora Johnson discuss all things clinical trials. Dr. Nicholas, a family practitioner and caregiver to her late husband, John MacCleod will dive into her experience searching for clinical trials along with advice to those currently searching, or planning on searching in the future. Dr. Heery, Chief Medical Officer for Precision Biosciences will spend time dispelling myths around clinical trials and challenges to enrollment, and Wenora Johnson, a stage III colon cancer survivor will describe the process and her point of view curating trials in the Fight CRC trial finder.
Takes Guts to be a Neuroendocrine PatientBill Claxton
perspectives on the importance of raising awareness about NETs as well as the challenges a patient faces, and how the World NET Awareness Day campaign may benefit patients
On September 3, 2015, Ovarian cancer survivors and FDA Patient Representatives Peg Ford, Susan Leighton and Annie Ellis were invited to provide the patient perspective at the recent Ovarian Cancer Endpoints Workshop hosted by the Food and Drug Administration (FDA). This meeting was co-sponsored by the Society of Gynecologic Oncology (SGO), the American Association for Cancer Research (AACR) and the American Society of Clinical Oncology (ASCO). Many important topics to the ovarian cancer community were discussed, including novel clinical trial designs, biomarkers, and new classes of agents such as immunotherapies.
what will happen if you ignore the patients suicidal thoughts expla.pdfamirajsharma
what will happen if you ignore the patients suicidal thoughts? explain well with references.
Nurses face more and more ethical dilemmas during their practice nowadays,
especially when taking care of the patient at the end of the life stage.
Ethical dilemma identification: The ethical dilemma is if the nursing staff should tell
other health care team members about a patient's suicide attempt without the
patient's consent.
To solve this case and make the best moral decision, the ethical theory, the ethical
principles, and the nurses' code of ethics values statement, the associated literature
relative to this case, are analyzed before making decisions.
The patient, Mr. Green, is a 57-year-old gentleman with aggressive prostate cancer
who is cared for by the nursing team in the oncology department of Cortellucci
Hospital. Mr. Green was diagnosed with prostate cancer seven years ago but
refused medical and surgical treatment at the time. He chose to seek alternative
treatment and did not follow up with the urologist over those seven years. Mr.
Green has now presented with anemia and hypoproteinemia. After several
diagnostic tests, it was discovered that the cancer had metastasized to his bones
and spread locally to his lymph nodes. The primary tumour was invading the
bladder and partially obstructing the left kidney.
Mr. Green had several admissions over two months for various reasons. On the last
admission, Mr. Green was told that he might only have 4 - 6 weeks (previously, it
was 6 - 12 months) to live after a cystoscopy showed further extensive growth of
the tumour. It was determined that further surgical/medical intervention would not
be appropriate in this case and that a palliative care regimen was the next step. At
this point, the patient reported to the healthcare team that he had resigned himself
to the fact that he was going to die.
Mr. Green pulled you aside and confided that he planned to kill himself and that it
was a secret that you were not to tell anyone.
Nurses face more and more ethical dilemmas during their practice nowadays,
especially when taking care of the patient at the end of the life stage.
Ethical dilemma identification: The ethical dilemma is if the nursing staff should tell
other health care team members about a patient's suicide attempt without the
patient's consent.
To solve this case and make the best moral decision, the ethical theory, the ethical
principles, and the nurses' code of ethics values statement, the associated literature
relative to this case, are analyzed before making decisions.
The patient, Mr. Green, is a 57-year-old gentleman with aggressive prostate cancer
who is cared for by the nursing team in the oncology department of Cortellucci
Hospital. Mr. Green was diagnosed with prostate cancer seven years ago but
refused medical and surgical treatment at the time. He chose to seek alternative
treatment and did not follow up with the urologist over those seven years. Mr.
Green has now presented with anem.
Question Why it is important to consider this case from an ethical .pdfsunilkhetpal
Question: Why it is important to consider this case from an ethical standpoint? According to the
CNA code of ethics. what ethical values should the nurse consider when communicating with
Mr. Green and her supervisor? Pls explain in 2 pages and with references.
Nurses face more and more ethical dilemmas during their practice nowadays,
especially when taking care of the patient at the end of the life stage.
Ethical dilemma identification: The ethical dilemma is if the nursing staff should tell
other health care team members about a patient's suicide attempt without the
patient's consent.
To solve this case and make the best moral decision, the ethical theory, the ethical
principles, and the nurses' code of ethics values statement, the associated literature
relative to this case, are analyzed before making decisions.
The patient, Mr. Green, is a 57-year-old gentleman with aggressive prostate cancer
who is cared for by the nursing team in the oncology department of Cortellucci
Hospital. Mr. Green was diagnosed with prostate cancer seven years ago but
refused medical and surgical treatment at the time. He chose to seek alternative
treatment and did not follow up with the urologist over those seven years. Mr.
Green has now presented with anemia and hypoproteinemia. After several
diagnostic tests, it was discovered that the cancer had metastasized to his bones
and spread locally to his lymph nodes. The primary tumour was invading the
bladder and partially obstructing the left kidney.
Mr. Green had several admissions over two months for various reasons. On the last
admission, Mr. Green was told that he might only have 4 - 6 weeks (previously, it
was 6 - 12 months) to live after a cystoscopy showed further extensive growth of
the tumour. It was determined that further surgical/medical intervention would not
be appropriate in this case and that a palliative care regimen was the next step. At
this point, the patient reported to the healthcare team that he had resigned himself
to the fact that he was going to die.
Mr. Green pulled you aside and confided that he planned to kill himself and that it
was a secret that you were not to tell anyone.
Nurses face more and more ethical dilemmas during their practice nowadays,
especially when taking care of the patient at the end of the life stage.
Ethical dilemma identification: The ethical dilemma is if the nursing staff should tell
other health care team members about a patient's suicide attempt without the
patient's consent.
To solve this case and make the best moral decision, the ethical theory, the ethical
principles, and the nurses' code of ethics values statement, the associated literature
relative to this case, are analyzed before making decisions.
The patient, Mr. Green, is a 57-year-old gentleman with aggressive prostate cancer
who is cared for by the nursing team in the oncology department of Cortellucci
Hospital. Mr. Green was diagnosed with prostate cancer seven years ago but
refused medical and surgi.
Similar to Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient (20)
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In an hour-long webinar, nationally recognized exercise specialist Carol Michaels, MBA, ACE, ACSM discussed how maintaining an exercise program during cancer treatment and recovery can help patients to minimize treatment side effects, increase energy levels, and reduce stress, along with many other benefits. Inspire produced the educational webinar in partnership with the Bladder Cancer Advocacy Network, US TOO International, and ThyCa: Thyroid Cancer Survivors' Association.
Patient-centric social media for outcomes and pharmacovigilance consideration...Inspire
Through the use of de-identified Big Data from online patient forums open to healthcare providers, the pharmaceutical industry may glean useful insights into both the safety of existing products as well as future needs of patients. Post-marketing safety surveillance for pharmaceuticals currently relies on data from adverse event reports to companies or regulatory authorities, medical literature, and observational databases. Together these sources provide some insight into everyday product safety or risk, but the unique insight the patients themselves can offer is also highly desirable.
Using insights from a 2016 research project involving Inspire, GlaxoSmithKline (GSK) Pharmaceuticals, and Epidemico, an innovative informatics company, we are exploring the use of social listening data for pharmacovigilance and other R&D concerns. A core question is, “What valuable insights can we glean from social listening to help improve patients’ lives—whether through improved safety, more relevant clinical trials, or research and development of new treatment options?”
Successfully Navigating the Parent Landmines in the NICU Inspire
Deb Discenza of PreemieWorld and the Inspire Preemie Support Community, presents at the 9th Council of International Neonatal Nurses Conference (COINN), in August 2016.
Support Without Borders: The Ovarian Cancer Online CommunityInspire
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Experts by Experience 2016: A compilation of patient storiesInspire
In cooperation with Stanford Medicine, Inspire presents the special report, "Experts by Experience 2016: A compilation of patient stories," the fourth in an ongoing series.
Optimize Social Listening and Monitoring to Uncover Unmet Consumer NeedsInspire
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Design Trials to Better Satisfy Patient Centric Outcomes Prior to Product LaunchInspire
Incorporate Patient Participation – Design Trials to Better Satisfy Patient Centric Outcomes Prior to Product Launch
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What Do Patients Really Want Out Of Adherence Technology?Inspire
Drawing insights from the 13,000-response Inspire Annual Survey, Dave Taylor, Inspire's director of research, presented at CBI’s Patient Adherence (PAAS) conference in Philadelphia, PA, in June 2015.
Advocacy in the Digital Age: Leveraging the Mental Health America/Inspire Sup...Inspire
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Experts by Experience 2015: A compilation of patients’ storiesInspire
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Struggling with intense fears that disrupt your life? At Renew Life Hypnosis, we offer specialized hypnosis to overcome fear. Phobias are exaggerated fears, often stemming from past traumas or learned behaviors. Hypnotherapy addresses these deep-seated fears by accessing the subconscious mind, helping you change your reactions to phobic triggers. Our expert therapists guide you into a state of deep relaxation, allowing you to transform your responses and reduce anxiety. Experience increased confidence and freedom from phobias with our personalized approach. Ready to live a fear-free life? Visit us at Renew Life Hypnosis..
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Welcome to Secret Tantric, London’s finest VIP Massage agency. Since we first opened our doors, we have provided the ultimate erotic massage experience to innumerable clients, each one searching for the very best sensual massage in London. We come by this reputation honestly with a dynamic team of the city’s most beautiful masseuses.
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According to Chris Mouchabhani, Managing Partner at M Capital Group, “Despite all economic scenarios that one may consider, beyond overall economic shocks, medical technology should remain one of the most promising and robust sectors over the short to medium term and well beyond 2028.”
There is a movement towards home-based care for the elderly, next generation scanning and MRI devices, wearable technology, artificial intelligence incorporation, and online connectivity. Experts also see a focus on predictive, preventive, personalized, participatory, and precision medicine, with rising levels of integration of home care and technological innovation.
The average cost of treatment has been rising across the board, creating additional financial burdens to governments, healthcare providers and insurance companies. According to MCG, cost-per-inpatient-stay in the United States alone rose on average annually by over 13% between 2014 to 2021, leading MedTech to focus research efforts on optimized medical equipment at lower price points, whilst emphasizing portability and ease of use. Namely, 46% of the 1,008 medical technology companies in the 2021 MedTech Innovator (“MTI”) database are focusing on prevention, wellness, detection, or diagnosis, signaling a clear push for preventive care to also tackle costs.
In addition, there has also been a lasting impact on consumer and medical demand for home care, supported by the pandemic. Lockdowns, closure of care facilities, and healthcare systems subjected to capacity pressure, accelerated demand away from traditional inpatient care. Now, outpatient care solutions are driving industry production, with nearly 70% of recent diagnostics start-up companies producing products in areas such as ambulatory clinics, at-home care, and self-administered diagnostics.
Navigating Challenges: Mental Health, Legislation, and the Prison System in B...Guillermo Rivera
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Defecation
Normal defecation begins with movement in the left colon, moving stool toward the anus. When stool reaches the rectum, the distention causes relaxation of the internal sphincter and an awareness of the need to defecate. At the time of defecation, the external sphincter relaxes, and abdominal muscles contract, increasing intrarectal pressure and forcing the stool out
The Valsalva maneuver exerts pressure to expel faeces through a voluntary contraction of the abdominal muscles while maintaining forced expiration against a closed airway. Patients with cardiovascular disease, glaucoma, increased intracranial pressure, or a new surgical wound are at greater risk for cardiac dysrhythmias and elevated blood pressure with the Valsalva maneuver and need to avoid straining to pass the stool.
Normal defecation is painless, resulting in passage of soft, formed stool
CONSTIPATION
Constipation is a symptom, not a disease. Improper diet, reduced fluid intake, lack of exercise, and certain medications can cause constipation. For example, patients receiving opiates for pain after surgery often require a stool softener or laxative to prevent constipation. The signs of constipation include infrequent bowel movements (less than every 3 days), difficulty passing stools, excessive straining, inability to defecate at will, and hard feaces
IMPACTION
Fecal impaction results from unrelieved constipation. It is a collection of hardened feces wedged in the rectum that a person cannot expel. In cases of severe impaction the mass extends up into the sigmoid colon.
DIARRHEA
Diarrhea is an increase in the number of stools and the passage of liquid, unformed feces. It is associated with disorders affecting digestion, absorption, and secretion in the GI tract. Intestinal contents pass through the small and large intestine too quickly to allow for the usual absorption of fluid and nutrients. Irritation within the colon results in increased mucus secretion. As a result, feces become watery, and the patient is unable to control the urge to defecate. Normally an anal bag is safe and effective in long-term treatment of patients with fecal incontinence at home, in hospice, or in the hospital. Fecal incontinence is expensive and a potentially dangerous condition in terms of contamination and risk of skin ulceration
HEMORRHOIDS
Hemorrhoids are dilated, engorged veins in the lining of the rectum. They are either external or internal.
FLATULENCE
As gas accumulates in the lumen of the intestines, the bowel wall stretches and distends (flatulence). It is a common cause of abdominal fullness, pain, and cramping. Normally intestinal gas escapes through the mouth (belching) or the anus (passing of flatus)
FECAL INCONTINENCE
Fecal incontinence is the inability to control passage of feces and gas from the anus. Incontinence harms a patient’s body image
PREPARATION AND GIVING OF LAXATIVESACCORDING TO POTTER AND PERRY,
An enema is the instillation of a solution into the rectum and sig
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Beyond Privacy: Social Media’s Ethical Responsibility to the Clinical Trial Patient
1. This document is confidential 1
Beyond Privacy: Social Media’s
Ethical Responsibility to the
Clinical Trial Patient
Brian Loew, CEO, Inspire
July 9, 2014
2. This document is confidential 2
Our goal today
To examine the ethical responsibility of the
researcher to protect the privacy of research
participants and protect personal health
information when using social media, and
discuss the roles and considerations of patients,
medical professionals and other parties
regarding these responsibilities.
3. This document is confidential 3
Challenges in enrollment
and retention
6. This document is confidential 6
About Inspire
A social network, organized by health
condition, that connects pharmaceutical
companies with patients and caregivers
in a safe, permission-based manner.
• 500,000 members (+12K/month)
• 208 health communities
• 105 advocacy partners
• 2,500,000 visits/month
• 6,661,000 posts (+4K/day)
• 950,000,000 words
8. This document is confidential 8
“If I become known as a cancer patient involved in a certain
trial, it's my own doing. I waived my right to privacy.”
“During my consultations with the trial doctor, he is careful
not to mention any names of other patients in the trial. He
speaks in generalities, such as "a Japanese woman" or ‘a
man in his 40’s.’"
“Unless specifically granted permission IN WRITING by a
patient, the research professional should always assume
privacy is of utmost importance to a patient.”
—New Mexico woman, never-smoker, with stage IV lung
cancer who is now in a clinical trial
Patient Perspectives
9. This document is confidential 9
“I recall that, after my debulking, (my doctors) wanted
me to enter a trial involving Avastin. The consent form
was many pages and listed all possible adverse
effects of the drugs I'd be given. I researched it
independently, found Avastin had about a 5% risk of
perforation, which, if that happened, had about a 50%
death rate. I decided not to do it. Even though I've
recurred twice, in almost four years, I've still not used
Avastin. It will be saved as a last resort and option.”
—Woman with ovarian cancer
Patient Perspectives
10. This document is confidential 10
Perspectives of cancer patients
“In the end, we are the ones who own our cancer.
Stop worrying about being 'nice.'”
—Male lung cancer survivor
11. This document is confidential 11
Perspectives of cancer patients
“Even though I was in remission, I chose to
do this (clinical trial) because I have a
daughter and 4 granddaughters. I loved the
idea, no matter how remote, of being part of a
study that might mean the end of OC.”
- Texas woman, 67, with ovarian cancer
12. This document is confidential 12
“If and when they do the genomic study, the results are
NOT medical history... but they are.. They are research
data...We do not have access to that stuff...None of
us...Not yet.
“My oncologist...of course is sort of meh about it
because the data is just data. There isn't a lot of
actionable stuff to do with with it.. She does agree that
this sort of donating blood and not getting any of the
results is the way of the past.. It just isn't terribly ethical.”
I understand that the data is really just data today,
but that one day it just might be the key to survival.”
“The key to survival”
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“I don't understand why it takes so long. I
signed the papers for this trial on June 7,
completed my 'cleanse' on June 18, Needle
Biopsy on June 19, and was informed
yesterday that now we can schedule the
screening…No one mentioned any additional
screening… I am antsy and what to start,
don't want the cancer to have anymore time
left unattended.”
--Female lung cancer patient
“Why does it take so long?”
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“We don't like a day going by in which we are not
on the attack.”
“My hubby had an unsuccessful biopsy...He’s
going to have 1 week of radiation to hopefully get
rid of some fluid buildup in the pleura area. I was
just told they aren't sure if a repeat biopsy will be
doable after the radiation. The oncologist now
seems to want him to try regular chemo instead.
We were both so excited to get into the trial and
now I don't know if he ever will...”
Perspective from others
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One member in cancer support community
tried to enroll in a Phase III trial in early 2014,
but was excluded Researchers did full
sequencing of mutations of her tumor but did
not release that data to her.
“My tumor sample was completely done, and
the data is part of the genomic study that is
going on. Why don't I just have access to
this? I am afraid it was an incredibly upsetting
experience.”
Patients expect access to data
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“Did you sign anything saying you know you
won't get access to your test results if you
weren't accepted into the trial? You know,
those multiple pages in size 3 font we sign
before we sneeze? If you kept a copy of what
you signed, maybe you could get a better
handle on how to access your results. This
has had to happen before in various trials by
those not accepted.”
--Fellow member of cancer support group
Words of encouragement
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“The medical information belongs to you. I
just don't get it. Demand it.”
--Fellow member of cancer support group
Words of encouragement
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Lessons of cachexia study
Overall, caregivers noted symptoms
to be at higher rates than patients,
while patients were much more willing
to participate in supportive care trials
to evaluate novel methods to manage
symptoms.
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Lessons of cachexia study
Perception of symptom severity by Stage IV NSLC patients & their caregivers
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Lessons of cachexia study
• Patients more open than caregivers to
patients participating in palliative care
clinical trials
• Indicates that even seriously ill patients
are open to research — they place
value in finding a way to help others,
and/or serving purpose.
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Thank you
Brian Loew, CEO, Inspire
brian@inspire.com
@brianloew