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Brain fog: the subtle side of scanxiety

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Image credit: Microsoft

Image credit: Microsoft

Tomorrow morning I fly out for another Monday PET-CT scan at University of Colorado (CU) in Denver. Tuesday I start cycle 35 of Xalkori on my clinical trial (cycle = 4 weeks). If my Tuesday clinic visit reports a clean scan, I’ll be almost 30 months NED on this targeted therapy.

Because my injured left shoulder is so inflamed, I asked my oncologist if I should have a CT instead of the usual PET-CT this time (inflammation shows up hot on a PET scan), but he says he will just ignore that shoulder. Since I had a detailed MRI of that area a couple of weeks ago when diagnosing my shoulder problem, I’m not concerned a metatasis might be missed. I do wonder how my shoulder will feel after having my arms over my head in the scanner for over 20 minutes, but that’s not a big concern either.

While at University of Colorado, I’ll also be meeting with a CU communications staffer (to discuss cancer center public relations), a molecular pathologist (to discuss ways to explain benefits of genomic testing), and Lung Cancer SPORE members (to discuss a SPORE project). I’m really enjoying my work and friendships with all of them, and love getting to learn about cutting edge science from those who are doing the research. Alas, Dr. Camidge is away on travel, so I won’t get to work on any videos with him this trip.

Interesting projects are definitely worthwhile distractions at scan time. I’ve been so busy with lung cancer advocacy and travel (26 days out of the last two months) that I haven’t had time to feel any conscious scanxiety. However, I still haven’t packed, completed household pre-trip tasks, or written items with impending deadlines, and I’m moving slower than usual. I find myself having difficulty thinking beyond my next cup of coffee. It’s sunny and clear outside, but gray and fuzzy inside my head. So maybe I’m not yet entirely immune to scanxiety’s influence.

Then again, the brain fog could simply be lack of sleep due to Seasonal Affective Disorder (the sun is up 16 hours of the day right now in Seattle), time zone tango, and travel schedules. The source of the fog doesn’t really matter, I suppose, as long as I warn my family of its presence. Otherwise they may wonder why the dirty dishes are in the microwave instead of the dishwasher.

#LCSM Chat topic 5/21: Living with and Beyond Lung Cancer

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This is a reblog of a 5/18/2015 post on the #LCSM Chat site (reposted with permission).

You mean I have to say something

Lung cancer patient advocates are beginning to make their voices heard and gain acceptance in the medical world.  For the first time ever, patient advocates will be speaking from the stage at the World Conference on Lung Cancer (WCLC), the largest meeting dedicated to lung cancer anywhere.  The meeting, which runs September 6-9 in Denver and is sponsored by the International Association for the Study of Lung Cancer (IASLC), will have sessions on research, treatment, biotech developments…and patient advocacy topics.

In the session titled “Advocacy in Practice,” #LCSM Comoderator Janet Freeman-Daily will be speaking about “Supporting Lung Cancer Survivors–Living with and Beyond Lung Cancer,” which will inform lung cancer healthcare providers … read more

Building cognitive skills after chemobrain

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Earlier this month the MIT News published an article titled, “The rise and fall of cognitive skills.”  It discussed research that found different types of thinking skills peak at different times in life.  I particularly like this part:

… crystallized intelligence — the accumulation of facts and knowledge … showed a later peak, in the late 60s or early 70s.

People who participated in this online study demonstrated their ability to build their vocabulary continued to increase into their 60s and 70s, which indicates their ability to accumulate facts and knowledge also continued to increase.  This is awesome!   As a person in my 50s with cognitive impairments from cancer treatment, I’m reassured to know that at least some parts of my brain may continue to improve.  Woohoo!

Now if I can just remember what I learn …

 

 

EPatients on the Front Lines: Precision Medicine, the FDA, and Me

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On February 19, 2015, I was an invited patient advocate speaker at the 11th Annual Moores Cancer Center Industry/Academia Translational Oncology Symposium. My topic, “EPatients on the Front Lines:  Precision Medicine, the FDA, and Me,” explained how cancer research could move faster and be more successful if researchers, pharmaceutical companies, and the biotech industry would collaborate with patients early in the trial design process.

You can see my slides here:

Edit May 7, 2015:  UCSD posted the video of my speech

Here’s the text of the speech, along with the links on the slides.

# Slide Speech
1 Title Thank you for inviting me to speak to you today.  I’m going to share a view of precision medicine from the patient’s perspective.  If I seem a bit tense, blame it on the PET scan I’ll have 4 days from now.  I’ll post the speech on my blog tomorrow, so you don’t have to take notes.
2 Genome Scarf This is the legacy of an epatient.  It’s a genome scarf. It represents the chromosome 18 base pair sequence of colonrectal cancer patient Jay Lake.  Jay was a prolific science fiction author and my friend. http://maryrobinettekowal.com/journal/jay-lake-genome-scarf/
3 Genome Scarf and Jay pic Jay was example of an epatient:  a patient who is Equipped, Engaged, Empowered, and Enabled, whether or not they’re online. In 2011, after several surgeries and chemo regimens, Jay was running out of options.  Friends told him about genomic sequencing and helped him research clinical trials. The science fiction community crowdsourced the funding to sequence and analyze Jay’s personal and cancer genomes. Jay shared his data with NIH researchers for his immunotherapy trial, and with Harvard’s open-source Personal Genome Project.  http://www.youcaring.com/medical-fundraiser/sequence-a-science-fiction-writer/38705
4 My journey-Diagnosis Like Jay, I’ve pursued cutting-edge scientific research in hopes of living longer with metastatic cancer. I was diagnosed with Stage 3a non-small cell lung cancer in May 2011.  I never smoked anything – except a salmon.
5 My Journey-Progression 1 After a month’s delay to treat pneumonia, I had concurrent chemo and radiation. My primary tumor and lymph nodes all responded. Two months later, a PET scan found a new hotspot on my collarbone. A biopsy confirmed my cancer had progressed.  Since I had severe radiation pneumonitis, my oncologist recommended a break from treatment. In the next three months, I grew a 3-inch mass on my collarbone.
6 My Journey-Progression 2 I had more chemo, followed by more radiation. A new scan showed all the known tumors were gone or dead. BUT … I had two new tumors in my other lung.  I now had metastatic lung cancer. Whenever I stopped treatment, I had a new tumor within two months.  My oncologist told me I would be on chemo for the rest of my life.
7 My journey-Patient as Participant However, I wasn’t just a recipient of care. The information I learned in the Inspire online lung cancer community enabled me to become an interactive participant.  From other epatients, I learned to ask for my data, including radiology and pathology reports.  I also learned more extensive molecular testing was available at other facilities, and arranged to have my slides sent to the University of Colorado Hospital for a 10-oncogene panel. Unfortunately, all tests were negative.
8 My Journey-ROS1 & Trial Here’s where the tone of my story changes.  An online patient told me I fit the profile of patients who had the ROS1 translocation–relatively young, adenocarcinoma, neversmoker, triple negative for the most common mutations.  He sent me the journal article of early trial results.  After my second progression, I contacted University of Colorado again, and learned they had recently developed a ROS1 test.  I gave permission to use my remaining slides.  When I learned my cancer was ROS1 positive, I enrolled in the crizotinib trial in Colorado.
9 My journey-NED Thanks to precision medicine and the online lung cancer community, I’ve had  No Evidence of Disease for over two years. I’m not cured, but life is relatively normal for now–if you ignore the scanxiety every 8 weeks.  I chose to enroll in a trial for treatment in hopes of better option than chemo forever.
10 Smart Patient LC Trials Chart Epatients are very interested in the treatment options available in precision medicine trials, but sometimes we have trouble finding the right ones. New trial finders–like this format created with input from epatients–can help patients find the right treatment at the right time. http://www.smartpatients.com/lung-cancer/trials
11 Purpose of Clinical Trial For clinicians, researchers, pharmaceutical firms, and industry, clinical trials are scientific experiments.  For epatients, clinical trials are treatment. Clinical trials are hope. By collaborating with epatients early in the design process, clinical trials not only can recruit more patients–they also move cancer research forward in ways that are meaningful to patients. Here are some examples.
12 Life Raft Group One of the earliest examples of patient involvement in clinical trial design comes from the Life Raft Group.  In the year 2000, gastrointestinal stromal tumor patients involved in the early Gleevec trials began sharing their experiences online in ACOR. Now Life Raft Group has the largest patient-generated clinical database in the world, and is driving research on GIST genome sequencing and drug screening.  http://liferaftgroup.org/
13 LMS Direct Research Foundation Another example of patient-driven research is the Leiomyosarcoma Direct Research Foundation.  LMS is very rare–only 4 people in 1 million have it.  In 2004, over 800 of those patients were members of an ACOR online support group.  One group member read a journal article about a GIST molecular study, and emailed the researcher to ask “What would you need to study LMS?” The answer was “tissue samples”  Patients recruited 500 donors from the online group, collected  slides from clinics, deidentified them, and gave them to the researcher. The Stanford lab has since identified several molecular subtypes of LMS as well as potential drug targets, and published nine journal articles in its first four years.  Key elements of this successful research collaboration were a motivated online patient network and a researcher who listened to those patients and trusted them as collaborators. http://www.lmsdr.org/stanfordu.php
14 TLS protocol crowdsourcing Technology is providing new ways to incorporate the patient voice.  In December 2012, the FDA cleared an Investigational New Drug Application (IND) for a multiple sclerosis therapy.  What’s remarkable is that the clinical trial protocol was the first ever developed with the aid of global crowdsourcing. That helped define primary and secondary endpoints, inclusion/exclusion criteria, and remote monitoring strategies for tracking patients.  http://dev.transparencyls.com/
15 ALCMI Young Lung Study 1 Patient networks and online technologies are also driving research for the most deadly cancer: lung cancer.   Currently 3-6 thousand newly-diagnosed lung cancer patients in the USA are under the age of 40, typically athletic never smokers.  The patient-founded Addario Lung Cancer Medical Institute designed a study of the somatic and germline mutations that might be driving the cancer in these young patients. The study is unique in that it allows patients to enroll either at a study site or online. It also provides genomic profiling data and treatment recommendations to patients as well as physicians.
16 ALCMI Young Lung Study 2 Because this trial was created in response to patient-identified needs and included the patient voice in all phases of trial development, it accrued 30 patients in the first two weeks.
17 Petition to FDA Patients, clinicians, and researchers can also collaborate on regulatory issues that impact clinical trials.  While working with a laboratory director at the University of Colorado, Dr. Dara Aisner, I realized that patients like me who had a genomic cancer variation might be unable to access essential testing under the FDA’s proposed regulations for laboratory developed tests.  By collaborating with medical professionals, I was able to help lung cancer advocacy groups submit comments to the FDA, and draft an online petition that collected over 700 signatures in less than three days. You can still sign the petition, by the way. https://www.change.org/p/protect-patient-access-to-precision-medicine-tell-fda-to-withdraw-proposed-ldt-regulations
18 CTTI The Clinical Trials Transformation Initiative, which seeks to increase the quality and efficiency of clinical trials, recognizes the patient voice must be included when defining the precision medicine landscape. http://www.ctti-clinicaltrials.org/home
19 Where to Find Epatients If you’re interested in finding epatients for collaboration, there are many places you can look for them.  Here’s where they may be hiding.
20 Obama Quote When President Obama announced the Precision Medicine Initiative, he said:”Patient advocates are not going to be on the sidelines. It’s not going to be an afterthought. They’re going to help us build this initiative from the ground up.”  He recognized the importance of including patient voices early in the design process. To be successful in the age of precision medicine, oncology researchers must collaborate with patients.
21 Thank You I hope I’ve encouraged further collaboration between cancer epatients, researchers, and industry. It will create faster paths to cancer cures.  Thank you for inviting me to share an epatient perspective at this symposium.

Special #LCSM Chat Topic 11/05 1 PM ET: @TheNCI hosts chat on precision medicine in lung cancer

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This is a repost of a blog on the #LCSM Chat website (posted with permission):

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#LCSM Chat is pleased to announce a special #LCSM Chat for Lung Cancer Awareness Month will be held on WEDNESDAY, November 5 at 1 PM Eastern Time (NOT our usual day and time). The National Cancer Institute (@theNCI) and a panel of experts will be using the #LCSM hashtag to talk about exciting new lung cancer treatment options!

This chat will be in question-and-answer format, with a panel of experts addressing specific topics posed by @theNCI as well as fielding audience questions related to those topics. This format is great for patients, caregivers, medical personnel and advocates regardless of their previous experience with tweetchats.  We hope you’ll join us!  (Check out our refresher on how to join a tweetchat)

Below is NCI’s announcement about the November 5 Chat.

On Wednesday, November 5 from 1:00-2:00 ET, the National Cancer Institute (@theNCI) will be hosting a Twitter chat on precision medicine in lung cancer using the #LCSM hashtag.

We’ll have a “who’s who” of precision medicine lung cancer experts on the chat, including:

  • Dr. David Gerber, Lung Cancer Specialist, UT Southwestern Medical Center
  • Ryan M. Hohman, JD, Managing Director, Policy & Public Affairs, Friends of Cancer Research
  • Dr. Shakun Malik, Head, Thoracic Cancer Therapeutics in the Clinical Investigations Branch of the Cancer Therapy Evaluation program at the National Cancer Institute
  • Dr. Geoffrey R. Oxnard, MS, Instructor in Medicine, Harvard Medical School
  • Dr. Vassiliki Papadimitrakopoulou, M.D., Professor, Department of Thoracic/Head and Neck Medical Oncology, at the University of Texas MD Anderson Cancer Center, Houston, TX

During the chat, the experts will be discussing, among other topics, how lung cancer treatment has changed over the last few years, provide more information about the definition of “precision medicine” as it applies to lung cancer, discuss when patients might consider a clinical trial, as well as provide more background and specifics on the Lung-MAP and ALCHEMIST clinical trials.

For more background information on Lung-MAP, we also recommend Friends of Cancer Research’s “What Leaders in the Field are Saying About Lung-MAP.”

My 2014 Stanford Medicine X Experience (Sep 4-7)

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I’m in Palo Alto, CA for four days attending the Stanford Medicine X (#MedX) conference, which focuses on emerging health-care technology and patient-centered medicine. The first day was a pre-conference workshop on Partnering for Health in clinical trials.

I’m having a blast! It’s like a giant TweetUp of patient advocates, healthcare providers, and technology innovators. I’ve met a dozen people that I’d previously only known online. Several of them are patients who are healthcare bloggers and tweetchat moderators like me and have diseases different than mine (diabetes, arthritis, lupus, other cancers, etc.) My roommate is a delightful young pre-med student who happens to love chocolate, and who has had no sense of smell for as long as she can remember (which is fortuitous, considering one of my Xalkori side effects).

Presentations and panels address the evolving nature of healthcare, with a strong emphasis on patient involvement. Some topics:
–How to include the patient voice when designing clinical trials
–How do patients who are not tech savvy (“no smartphone patients”) obtain medical records and learn about their disease?
–Technology to assist those with disabilities
–New apps and devices for improving outcomes (e.g., a device that tracks when bedridden patients need to be turned to avoid bedsores)
–The value of relationships in promoting health
–Training medical students and doctors to incorporate empathy in patient care and ask the patient what is important to them
–Patients self-tracking their health data (e.g., diabetes blood levels and insulin doses)
–Which metrics to use when choosing a doctor, and where to find them, and new ways to gather the info

At least half the people in the audience are interacting with their smartphones, laptops and tablets during the event. I can see how all the online activity is extending the reach of the conference, which is also being streamed live (except when the server crashes from overwhelming demand). It is fascinating to watch the presentations and simultaneously read a very active #MedX Twitter stream that summarizes, critiques and expands on what is being said.

I’ve seen some cool vendor demos also, like 3D printing of medical models and devices:

IMG_6646.JPG

My speech is tomorrow (Sunday September 7) at 10:10 AM PDT. Hope you’ll be watching via Medicine X Global Access! If you miss it, it will be posted online eventually.

I fly to Denver Sunday evening for my eight-week scan on Monday. I must admit this conference is a great scanxiety distraction.

Mantras of the Cancer Revolution

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Here’s an inspiring and hopeful talk about finding cancer treatments.

Targeted therapies are revolutionizing the way cancer is treated. One of the leaders of this revolution is Dr. Ross Camidge, Director, Thoracic Oncology Clinical Program at University of Colorado Hospital. He recently gave a talk to Colorado State University’s biotech students, using examples of his lung cancer research to inspire the students to careers in biomedical science.

CSU Career Center’s BioTech Connect: Ross Camidge

RECAP — Mantras of the Cancer Revolution:

The revolution in cancer treatment happened when the effectiveness of crizotinib for ALK+ lung cancer was discovered. “The whole drug development industry in cancer changed overnight. It wasn’t about finding one drug that was going to work a little bit in everybody. It was about findiing a drug that worked amazingly well in a small number of people.”

Camidge stated the following “mantras of the cancer revolution”:

1. One size does not fit all
(personalize cancer treatment based on each individual’s cancer)

2. Don’t walk away from a good thing
(if the targeted drug is working, stay on it as long as possible)

3. If the cancer moves, follow it
(if the cancer moves into brain, make a drug to treat the brain)

4. Question everything

Disclosure: Dr. Camidge is my clinical trial oncologist. I feel incredibly blessed to have him leading my lung cancer team.

What Is an “Off Label” Cancer Drug?

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Sometimes the term “off label” comes up in discussions of cancer drugs.  What does “off label” mean?

All prescription drugs sold in the USA have been approved for use by the U.S. Food and Drug Administration (FDA).  After a drug is approved by the FDA, it sometimes is used for different purposes or in different populations.  That is “off label” use of a drug.  As WebMD explains, it’s perfectly legal. Per the National Cancer Institute’s definition, off label is “the legal use of a prescription drug to treat a disease or condition for which the drug has not been approved by the U.S. Food and Drug Administration.”

Consumer Reports states off label drug prescription is actually very common.  More than one in five outpatient prescriptions today are written off label.  For instance, Neurontin (also known as gabapentin) was originally approved to treat seizures.  It is now also used to treat nerve pain and neuropathy – an off label use.  However, one trusts that one’s doctor will only prescribe a drug with good evidence that drug is useful for the patient’s disease or condition.

Two types of off label use occur. The first type is when a drug is used to treat the approved disease, but used in a manner different than stated in the FDA approval.  For instance, use of the antidepressant Zoloft is off label in children (Zoloft is FDA approved for adults only); taking a drug in a larger dose or on a different schedule than that approved by the FDA is also off label. The second type of off label use is when a drug is used to treat a condition or disease different than that for which the drug was originally approved.

Cancer drugs are sometimes used off label to treat metastatic patients who have exhausted traditional treatment options, but only if evidence indicates the drug might be effective against the patient’s particular cancer situation.  For example, crizotinib (Xalkori) was approved by the FDA only for non small cell lung cancer (NSCLC) patients whose tumors tested positive for the ALK translocation (a type of mutation in a specific gene called ALK).  In addition, the approval stated the patient’s ALK-positive (ALK+) status had to be determined by a specific molecular test.  Prescribing Xalkori for patients who test ALK+ using a different type of test (genomic profiling) is an off label use, because the patients weren’t tested with the specific test named in the FDA approval.  This is not a big deal, because research indicates both tests identify ALK+ tissue with high accuracy.

Xalkori is also legally prescribed for a different disease: ROS1+ lung cancer in patients (like me). ROS1 is a different tumor mutation than ALK, but has a similar structure–technically, ROS1+ NSCLC is a different disease than ALK+ NSCLC. This is an off-label use, because Xalkori has not been approved for treating ROS1+ lung cancer.  Xalkori for ROS1+ lung cancer has been in clinical trials for over two years, with a goal of someday obtaining FDA approval (this is the clinical trial in which I am enrolled). Strong evidence from this clinical trial indicates Xalkori has a high response rate in ROS1+ lung cancer patients, so oncologists are now prescribing Xalkori for this use even though it’s not approved by the FDA for that purpose.

Even a drug that’s approved to treat a particular cancer can be used to treat that cancer in off-label ways. Examples are when a drug normally approved for first line treatment is used for maintenance, or when the dosing interval differs from the schedule called out in the FDA approval.  A friend who has metastatic lung cancer could not tolerate the standard combination chemotherapy for lung cancer because he couldn’t have a platinum drug.  He wanted to have Gemzar, a relatively well-tolerated chemo, off label as a single agent (Gemzar’s FDA approval says it must be used with a platinum drug). After consulting several different oncologists, all of whom wanted to put him on hospice, he found an oncologist willing to give him Gemzar off label as a single agent.  My friend was stable on Gemzar for over two years.

As genomic testing identifies more mutations in different types of cancer tumors, drugs that are FDA approved for one type of cancer – say, a BRAF inhibitor for melanoma– might be tried in a BRAF+ lung cancer patient.  Or, an oncologist might prescribe a cancer drug off label after a functional profiling assay indicates a drug approved for a different cancer is effective against a patient’s tumor tissue. Until FDA approval is given for the drug to be used in a different cancer, this is considered an off label use. However, it could also be a life-saving use for the patient.

“As a cancer patient, it’s always a good idea to ask your oncologist what evidence he has for using a drug off label to treat your cancer. Most oncologists will cite results from early research or a clinical trial. If they don’t have such evidence, ask LOTS of questions. You as the patient are ultimately the one assuming the risk of an off label drug.”

Assuming one has an up-to-date and responsible oncologist, a cancer patient’s primary concerns regarding an off label cancer drug are usually side effects, and whether their insurance will cover a non-approved use of that drug. Sometimes insurance companies will not cover a pricey drug used off label.  When oncologists started prescribing Xalkori for ROS1+ lung cancer outside of clinical trials, some insurance companies refused to cover the expensive drug (around US $10,000 per month) because it was not FDA approved for that type of cancer.  However, I’m hearing more ROS1+ LC patients say their insurance is covering Xalkori even without FDA approval. Insurance companies are learning to adapt to the changing molecular landscape of cancer, just as researchers, oncologists, regulators and professional organizations are.

The times they are a changin’.  Off label cancer drugs may be the new black.

My Orycon 2013 Science Panels

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I’m going to Orycon 35, a science fiction convention held November 8-10, 2013, in Portland, Oregon. The programming folks have dreamed up some interesting science panels! I’m especially looking forward to the panel Jay Lake and I are doing on “Living with Late Stage Cancer,” which was very well received at the World Science Fiction Convention in San Antonio last August. If you’re attending Orycon, I hope you’ll attend one of my panels or find me in the halls (I’m not a night owl nowadays, so I’ll be scarce at parties).

The Science of Funding Science
Fri Nov 8 4:00pm-5:00pm (Alaska)
Are we missing out on gaining knowledge because of political correctness?

Living With Late Stage Cancer
Fri Nov 8 5:00pm-6:00pm (Alaska)
What it’s like to live from scan to scan, how we learn about different treatment options, coping when treatment fails, and answering questions from the audience.

Would you go to a doctor whose professors were witch doctors?
Sat Nov 9 10:00am-11:00am (Idaho)
What medicine has gotten right and wrong over the eons.

Do we all really need to know calculus?
Sat Nov 9 1:00pm-2:00pm (Alaska)
Is it really necessary for everyone to graduate from high school knowing physics? How much math do we really use on a daily basis?

I want to get my science on?
Sat Nov 9 4:00pm-5:00pm (Alaska)
Where does the lay person keep up with the latest developments

Ask Dr. Genius: Ad-Lib Answers to Audience Questions
Sat Nov 9 5:00pm-6:00pm (Alaska)
No, really, they’re real scientists, honest. Bring your science questions, and if they don’t have an answer they’ll make something up, and it might even be sort of right.

Cancer sucks-is there hope?
Sun Nov 10 11:00am-12:00pm (Alaska)
New insights into cancer provides glimmers of hope for victims and their families. How are new treatment options shaping up? How soon can we hope for a cure?

Midi-chlorians? Really?!
Sun Nov 10 1:00pm-2:00pm (Alaska)
Best and worst science in the movies.

Finding Good Biomedical Science Articles

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Every day patients with cancer and other health issue turn to the Internet to learn about symptoms, causes, and treatments for their conditions. Consumers have many good options for consulting “Dr. Google.” Some websites (like mayoclinic.com) have outstanding credentials for providing medical information. Other sites like PubMed are good places to search for biomedical journal articles.

But not all online biomedical journal articles contain good science.

Science magazine–a premier, peer-reviewed science journal–recently conducted an experiment in which a correspondent submitted a biomedical research paper to open access journals for publication. Open access journals rely on author fees rather than subscriptions. The paper announced a new treatment for cancer derived from lichens. Its science and conclusions were clearly flawed, which should have been caught by each journal’s peer review process. Yet many of the journals published the flawed paper anyway.

This is why I stick to PubMed and journals of demonstrated quality as sources for biomedical articles. It isn’t a foolproof method for finding good science, but it’s better than just googling a topic. You simply can’t believe every headline or abstract you read.