The President’s Cancer Panel Wants … ME?

When the Twitter icon indicated I had a new direct message last Tuesday, I took my time opening it. I was down with a bad case of the flu, including a fever and a cough that had stolen my voice, and I wasn’t at the top of my game.  When I finally clicked on the icon, I felt a jolt of adrenaline.

The message was from “@PresCancerPanel” and started “We’d like to invite you to …” …continue reading


Edit May 7, 2015:  list of March 2015 workshop participants

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

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.
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.
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.
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.
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.
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.
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.
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.
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.

Technology for Coordinating Care — #hcldr chat 10/28

Lung cancer and other acute/chronic health conditions require care teams with more than one healthcare professional, sometimes located in more than one care facility.  To provide the best care for the patient, these teams often must coordinate with the patient as well as caregivers, family members, care facilities, and community services.  How can technology platforms (like smart phones and social media) help with this process?

#HCLDR Chat will tackle this topic, Platforms for Community-Wide Care Coordination, in their next chat on Tuesday, October 28, at 8:30 PM Eastern Time.

I hope you’ll join the #hcldr chat and share YOUR thoughts on this important subject.  We’ll be discussing the following topics:

  • T1: What are the most important challenges patients, family members & caregivers face in coordinating care?
  • T2: What challenges do care teams (clinicians, lay health workers, managers) face in coordinating care?
  • T3: What are examples of where social media and other technologies have supported care coordination?
  • T4: How can social media & other technologies help coordinate care for publicly insured, rural & other underserved communities?

I (@JFreemanDaily) will be participating as a guest in this chat, along with other members of a panel who will be presenting at the upcoming Workshop on Interactive Systems in Healthcare (WISH) 2014 which will be co-located with the American Medical Informatics Association (AMIA) Annual Symposium on November 15, 2014 in Washington, DC.   The responses gathered in the #hcldr chat will be included in our WISH panel discussion.  The other panelists participating in the chat are:

  • Katherine Kim, PhD, MPH, MBA (@kimkater): health informaticist, researcher and Assistant Professor at University of California, Davis
  • Charles Boicey, MS, RN-BC, CPHIMS (@N2InformaticsRN): Enterprise Analytics Architect for the State University of New York, Stony Brook Medicine
  • Susan Hull, MSN, RN (@SusanCHull): nursing executive , founder and CEO of WellSpring Consulting
  • Anna McCollister-Slipp (@annamcslipp): diabetes epatient, co-founder of Galileo Analytics

My Take on This

This is a topic of great interest to me.  I can see many care coordination needs that might be addressed with technology platforms.  Here are some snippets from my own experience as a lung cancer patient.

Having multiple care providers at different facilities is a common situation with lung cancer.  When I was undergoing my first line of treatment, I met regularly with seven healthcare providers in four different facilities:  a pulmonologist and infectious disease doctor in a major medical center, a medical oncologist and infusion nurse in a local clinic, a  radiation oncologist and nurse in a different local clinic, and a contractor that provided supplies for my PICC line.  Even though the doctors all belonged to the same medical center, each facility had different scheduling software and limited or no access to my electronic medical records at the other facilities.  Care coordination was mostly done by telephone and fax.  My husband and I tracked my daily appointments on a wall calendar at home.  If the infusion nurse giving me my chemo needed to ask a question of the radiation oncology nurse who has seen me when I received my radiation treatment 30 minutes earlier, they played phone tag in between patients.  Having a common platform accessible to all team members that showed my appointment schedule and treatment notes and allowed even brief instant messaging (e.g., “give Janet 1L IV fluids after her chemo today”) would have been very helpful.

Having a device that could display my current health conditions and meds, then connect an emergency medical tech or doctor to my oncologist (even when out of cell phone range) would be pretty nifty.  Currently I keep a two-page summary of my lung cancer treatment history and contact info with me on a USB Medic Alert bracelet when I travel.  This presumes whoever finds me unconscious has a PC with a USB port and a PDF reader handy. My epatient friend Casey Quinlan had her medical record access info tattooed as a QR code on her chest.

I have learned the value of keeping a complete set of my medical records at home in case I need them.  While I can access some of my medical records online at the two medical centers where I currently receive care, right now I can only see lab results, and (at one facility) scan reports.  When my tumor tissue underwent mutation testing at an NCCN facility, an oncologist’s office at the same facility couldn’t find the test results without my sleuthing to find a specific number on a faxed copy of the test report–fortunately I had requested one previously.  There’s GOT to be a better way to transmit current medical records rapidly between facilities than faxing or emailing scanned documents!

Metastatic lung cancer patients like me–especially those who are eligible for targeted therapies, aggressive treatment, or clinical trials–find second opinions can be life saving.  When a patient takes a turn for the worse or a clinical trial has limited openings, the second opinion may occur on short notice.  For me, pursuing a second opinion for my lung cancer today would mean going to a 3-foot-deep file cabinet drawer and gathering a stack of CDs containing relevant CT, PET, and MRI scans and other medical records (clinic notes, pathology reports, lab results, chemo summaries, radiation treatment summaries, etc).   If I were to include all the records I’ve generated in over three years of lung cancer treatment, the stack of CDs would be over 4 inches thick.  The radiology scan files are too big to be transmitted electronically and still preserve the ability to view the data, so I’d take those CDs with me.  All those other records provided by my care center exist as a few unsearchable pdf files containing hundreds of images of hardcopy documents.   For those records, I’d save the second opinion doc from having to read every single page of the huge file; instead, I’d ask which files they need to see, and print hardcopies to take instead (I keep the most important of these in a 3-ring binder).  If I had a week, I could request CDs of the specific files from the medical records department and wait to receive them via snailmail.

Some patients may use medical devices such as my CPAP machine that generate medical data useful to the care team.  However, it may be difficult or impossible to pass that data to a healthcare provider in a different location, or even access the data if the device employs proprietary designs.  My CPAP has a removable SD disk that can be read by most card readers in PCs.  However, I’d have to download the software to read it, and I can’t capture the data I read so I can transmit it to anyone.  “Interoperability” doesn’t really exist with medical devices yet.  I may be hallucinating from too much chocolate, but I’d love to see a platform that provides an interface to different medical devices and electronic medical records so they can network the way my Fitbit shares data with my LoseIt! diet app on my smartphone.

I’d also love to see care coordination solutions designed for those who do not have reliable access to the Internet.  Not all patients live in areas where broadband Internet or cell phone coverage is available, and not all patients can afford to pay for Internet service or devices that access it.  Yes, they could go to the library, but who wants to put sensitive personal medical info on a screen and unsecure computer for everyone to read?

Speaking as a system engineer, creating a secure technology platform that meets all the requirements and desirements without causing more complications in the already messy digital medicine world will require out-of-the-box creativity.  Maintaining data security and HIPPA privacy is essential.  Forcing already overloaded healthcare workers to use yet another interface, or forcing facilities to invest in a new standardized medical records system without providing the funds and training to implement it, are both non-starters.  The motivation for change will have to come from demonstrating that a new technology platform improves care quality and access, reduces cost and workload, and is readily adopted by patients and carers alike.

The first step in solving this problem is to capture the requirements; I hope the #hcldr chat on 10/28 will contribute to this effort.

Care Coordination Challenge graphic (UC Davis)
Image credit: UC Davis Betty Irene Moore School of Nursing

Are insurance computer glitches contagious?

Recently I received a $4000+ bill from University of Colorado Hospital (UCH) for my December 2013 PET/CT scan and labs. When I receive any bill from UCH, it means my healthcare insurance didn’t pay for something.  The same procedures have been covered completely for all previous UCH visits (most recently in October 2013), and my health insurance coverage has not changed in years. I called UCH, and was told my insurance carrier said I did not have coverage at the time the procedure was performed.  My carrier, Blue Cross Blue Shield of Illinois (BCBSIL), helped me resolve the problem by calling UCH directly while I was on hold (thanks for the outstanding customer service, BCBSIL). Together BCBSIL and UCH determined the UCH computer showed the wrong BCBSIL member number for me–not just a digit or two wrong, but completely wrong. I decided to raise the issue when I’m back in Denver on January 27, and put it aside for now. It was probably just a data entry error.

But then …

Today I read this Huffington Post article from January 10, 2014. It tells of a woman who signed up for a new Obamacare Anthem policy in December through an insurance broker, but her hospital was unable to confirm that she had insurance coverage. The story caught my attention for two reasons: the UCH computer has always shown my insurance coverage as being “Anthem,” and this woman’s insurance issue happened about the same time as mine.  Fortunately, her issue was also resolved in her favor.

Now, however, I’m wondering if computer glitches associated with the online healthcare exchanges might be affecting computerized insurance records of longstanding customers. I have no proof, and no way to investigate this theory, but the thought is unsettling.