#PatientsIncluded for @IASLC’s 16th World Conference on Lung Cancer (#WCLC2015)

 IASLC WCLC header 400

This coming week I will be attending the 16th World Conference on Lung Cancer in Denver’s Colorado Convention Center run by IASLC (the International Association for the Study of Lung Cancer). I’m looking forward to live tweeting some sessions (using #WCLC2015), hanging out with fellow patients and advocates, and connecting with many online friends–some I’ve not yet met in person. I’m also giving my first speech as a patient at a medical conference focused on lung cancer, and making some videos with nonprofits and media groups.

This conference is groundbreaking for the “Patients Included” movement–I believe it’s the first time any professional oncology conference has intentionally included the patient voice by scheduling several patient speakers. Registration fees are waived for patients and advocates, the advocacy track has scheduled events each day, and lung cancer survivor Emily Bennett Taylor will be the keynote speaker at the Opening Ceremonies on Sunday September 6.

WCLC is the world’s largest meeting dedicated to lung cancer and other thoracic malignancies. More than 7,000 delegates come from over 100 countries to discuss the latest developments in research. Attendees include clinicians surgeons, medical oncologists, radiation oncologists, pulmonologists, radiologists, pathologists, epidemiologists, basic research scientists, nurses, allied health professionals, advocates and patients.

If you’ll be attending and would like to meet me during the conference, below are some events where you can find me. Amazingly, all of my days begin with activities at 7:30 AM or earlier.

Sunday 9/6 7:30-11:00 AM
5 Card Pancake Stroll
Come walk with Team #lcsm to raise funds for Bonnie J. Addario Lung Cancer Foundation and IASLC.

Sunday 9/7 11:30-12:30
Speaker, WCLC Press Conference (room 108-110-112)
Yes, IASLC included a patient in a press conference—awesome!

Monday 9/7 4-19:00
#LCSM Tweetup at The Corner Office Restaurant (Sponsored by Cancer GRACE)
Meet others who participate in the biweekly Lung Cancer Social Media Chat on Twitter. This is the best place to catch me if you want to meet and chat for a few minutes—I expect to attend 4:30-6:00 PM.

Tuesday 9/8 10:45-12:15
Co-Chair, Oral Session 27: “Care” (rooms 708-710-712)
Together with my co-chair, I will introduce the scheduled speakers.

Wednesday 9/9 14:15–15:45 PM
Speaker, Mini Symposium 27: “Advocacy in Practice”(room 703)
My speech “Supporting Lung Cancer Survivors – Living with and Beyond Lung Cancer” is scheduled for 15:20-15:35. Friend and fellow lung cancer patient CraiginPA will also present in this session.

It’s going to be a great conference! Hope to see you there.

My Worldcon 2015 Schedule

Here is my schedule of events next week for Sasquan (the 73rd World Science Fiction Convention) in Spokane, Washington. Hope to see you there!
Kaffee Klatche

Thursday 8/20 15:00 – 15:45, 202B-KK4 (CC)
Science Reporting

Friday 8/21 11:00 – 11:45, 302AB (CC)

Anne Hoppe (M), Frank Catalano, Janet Freeman-Daily, Charlotte Lewis Brown
Blinded by Pseudoscience

Friday 8/21 15:00 – 15:45, 300D (CC)

Sam Scheiner (M), Janet Freeman-Daily, Gregory Gadow, G. David Nordley, Alvaro Zinos-Amaro
Fanwriting from Twiltone to Facebook: Zines, Blogs, Social Media — What’s the Diff?

Sunday 8/23 14:00 – 14:45, Bays 111C (CC)

Janet Freeman-Daily (M), Mike Glyer, Catherynne M. Valente, Jim Wright, Megan Frank

The Value of Patient Engagement

Below is the presentation I gave to the Virginia Mason Board of Directors in Seattle, Washington, on 14-July-2015.



Thank you for inviting me to speak to you today. I’ve been a patient of Virginia Mason since 1987, and am grateful for the excellent care I received and the wonderful healthcare providers I’ve come to know. Today I’m going to tell you about my journey as a metastatic lung cancer patient, and how being an engaged patient in online communities has helped keep me alive. Evidence shows being an engaged patient improves outcomes for the patient and reduces costs for the healthcare system. I’ll also share some ideas based research and my own experience that can help Virginia Mason increase patient engagement.


In early 2011, I had a nagging cough [hack hack]. To make my husband happy, I went to see my doctor. After two rounds of antibiotics, and weeks of diagnostic procedures, I was diagnosed with Stage 3a non-small cell lung cancer in May of 2011. I never smoked anything – except a salmon.


After a month’s delay to treat obstructive 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 lung inflammation, my oncologist recommended a break from treatment. In the next three months, I grew a 3-inch mass on my collarbone.


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. Fortunately, just after I began first-line treatment, a friend and fellow cancer patient recommended I join an online support group for lung cancer patients.

 Slide 5 (updated)

In my online lung cancer community of over 20,000 people, I found patients with my type of lung cancer, on the same treatment, who understood exactly what I was feeling and experiencing. They answered questions I didn’t think to ask at doctors appointments while I was still in shock over my diagnosis. They suggested ways to cope with side effects at home. They prodded me to ask my doctor about issues I hadn’t thought were important. They were available in the wee hours when the fear was overwhelming. They shared online information resources from reliable authorities like the National Cancer Institute.

Online patient and caregiver communities form around specific diseases or treatments on patient-centered forums, social media sites, and disease advocacy organization sites. Patient blogs describe individual disease experiences and advocacy efforts on a variety of platforms and media. Some online communities connect patients and caregivers with researchers and clinicians. Patients can learn more about their diseases and treatments on trusted sites such as government agencies, medical societies, academic cancer centers, and cancer advocacy organizations. The Internet also offers information about treatment facilities and healthcare providers.


 The information I learned on Inspire enabled me to become an interactive participant in my care. 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. After my first progression, I arranged to have my slides sent to the University of Colorado Hospital for testing under the Lung Cancer Mutation Consortium Protocol clinical trial. Unfortunately, all tests were negative, but I was pleased that my Virginia Mason doctors took an interest in my test results.


I learned about clinical trials through my online patient community and searching clinicaltrials.gov. Another epatient told me I fit the profile of patients who had the ROS1 translocation—I was relatively young, had adenocarcinoma, was a never smoker, and tested negative for the three most common mutations. He told me about the ROS1 trial, which he was in, and sent me the journal article with initial results as soon as it was published. However, my Virginia Mason team had not heard of ROS1, and did not know how to test for it.


I didn’t act on the information immediately because I was already in treatment. However, after my second progression, I contacted University of Colorado again, and learned they had recently developed a ROS1 test. I gave them permission to test my remaining slides. When I learned my cancer was ROS1 positive, my Virginia Mason team was enthusiastic and worked quickly to determine whether my new lung nodules were cancer. When one of the nodules grew 50% in one month, they agreed I should try the ROS1 crizotinib trial, and I enrolled at University of Colorado in November 2012.


Thanks to precision medicine and the online lung cancer community, I’ve had No Evidence of Disease for 30 months. I’m not cured, but life is relatively normal for now–if you ignore the scanxiety every 8 weeks. I will eventually develop resistance to this drug, but I know other clinical trial options are now open to me.


I am alive because I am an e-patient. E-Patients are not just patients who go online to find information. The are any patient who is equipped, engaged, empowered, and enabled. Because I became an e-patient, I was able to actively participate as a partner in shared decision making with my healthcare providers. I was able to express my goals for my care, and my Virginia Mason providers incorporated my values into our discussions.

When my oncologist suggested I take Alimta chemo for my second line treatment, I suggested that we consider adding Avastin. Even though that was a more aggressive treatment, my oncologist agreed because he knew I understood the risks as well as the potential benefits. My Virginia Mason doctors did not suggest shared decision making or offer me any decision aids, but they were very open to discussing options with me when I initiated the conversation.


Preliminary studies indicate patient engagement and shared decision making can increase patient satisfaction and outcomes and reduce healthcare costs. Activated patients are less likely to be readmitted within 30 days of discharge, less likely to have poor care coordination across healthcare providers, and less likely to lose confidence in their health care system.

But not all patients are naturally inclined to become engaged participants in their healthcare. How can we encourage patient activation and engagement? What motivates a patient to become engaged?


The Internet is now accessible to large portion of the US population. As you might expect, the percentage is higher among younger age groups, approaching 100%, but the rate of new users is growing fastest among the Medicare crowd.


Patients are already accessing health information on mobile devices such as smartphones. Caregivers, patients facing medical crises, and patients dealing with significant health changes are more likely to use their smartphone to look for health or medical information online.


Connected health fills needs not met by the traditional healthcare system. As of 2010, the majority of Internet users have looked online for information about specific diseases or medical problems, or checked out medical treatments or procedures. And those numbers have grown over the past 5 years.

A 2013 Pew Research study of people who have access to the Internet found those living with a chronic condition are more likely to:

  • Gather information online about medical problems, treatments, and drugs.
  • Consult online reviews about drugs and other treatments.
  • Read or watch something online about someone else’s personal health experience
  • Fact check what they find online with a medical professional.

ePatients are more savvy than you may think. You might be concerned that receiving medical advice from others online is dangerous. So far, it’s not. Pew Research found 60% of Internet users who go online for health information say they’ve been helped. Only 3% say they or someone they know have been harmed.


The Internet and other connected health resources do not replace the need for healthcare providers. Research shows patients still consider their healthcare providers the most trustworthy source of health information.   Rather, connected health resources save time and reduce costs by answering questions that arise after the patients have left their providers’ office or facility, providing patients with reliable information they can bring to shared decision making discussions, and encouraging patient engagement in their own care.

When I developed a hard nodule at the base of my neck after my first line treatment, it was my online support group that encouraged me to tell my provider about it sooner rather than later.


 A Health Affairs Health Policy Brief, defines “patient activation” as a patient’s knowledge, skills, ability, and willingness to manage his or her own health and care. “Patient engagement” is a broader concept that combines patient activation with interventions designed to increase activation and promote positive patient behavior, such as obtaining preventive care or exercising regularly. It is these interventions, along with access to trusted information sites, that Virginia Mason can provide to its patients to promote patient engagement.


Connected health can provide tools to support care coordination. Seventy percent or more of caregivers are interested in using technologies for tracking personal health records, coordinating caregiving, and helping with medication management. Pew research studies show that 84% of women and 75% of men conduct health research online for someone else.

Connected health tools can also help patients navigate the healthcare system. Trained navigators, patient advocate translators, social media curators, adaptive search tools and shared rating systems could help patients find the most appropriate information from the most relevant trusted resource. Apps could provide information for specific diseases and treatments. Interoperative platforms could enable care coordination across silos of care, care locations, and care providers.


Virginia Mason needs to develop a patient engagement strategy to guide its efforts and meet the strategic goal within Innovation of Service for full partnerships with patients and familes. You might want to use the Healthcare Information and Management Systems Society (HIMMS) patient engagement framework as a guideline. I understand it was emailed to you before the meeting. It’s divided into five sections. I’ll use my experience as examples of what might be included in each section:

  • Inform Me
    • Provide my care plan and a summary of my providers on my patient portal site
  • Engage Me
    • Give me an app that describes my chemo’s side effects and ways to treat them
    • Send my treatment schedule appointments to my smartphone and email reminders for follow-ups
  • Empower Me
    • Allow me to take care experience surveys online
    • Transmit my medical records electronically for a second opinion [explain file cabinet example]
  • Partner With Me
    • Provide a care coordination platform that enables family members to select and share care duties, like transportation or meal preparation
    • Provide electronic survivorship plan with schedule for follow-up and therapies
  • Support My e-Community
    • Offer a wearable that provides med reminders tailored to my prescriptions [example: silent alarm on my fitbit]
    • Provide decision aides to help me evaluate treatment options [example: aggressive biopsy]


Providing patient engagement tools and supports can benefit the Virginia Mason system and facilities as well as patients. They can help retain patients, attract new patients, improve health outcomes, increase employee retention, attract more qualified employees, and bolster your reputation.


I hope I’ve shown you the benefits of patient engagement, and encouraged you to develop patient engagement strategies for Virginia Mason. Thank you for inviting me to share my story and perspective.

Are you a connected cancer patient? Tell the President’s Cancer Panel what you think!

This blog was originally published July 6, 2015 on my Cure Today blog.
hcldr connected cancer patient chat

Like many cancer patients, you are part of connected health: by reading this blog, you are using technology like the Internet, computers and smartphones to access information about a disease or patient experience.

This year the President’s Cancer Panel workshop series is addressing various aspects of connected health. Their third workshop on July 9, titled The Connected Cancer Patient: Vision for the Future and Recommendations for Action, will be open to the public (see agenda and attendees ).

Cancer patient advocates Corrie Painter, Stacey Tinianov and I will be participating in the July President’s Cancer Panel Workshop.  To help gather input for the event, we will be guests on the Healthcare Leadership (#hcldr) tweetchat Tuesday, July 7, at 8:30pm Eastern Time.  The questions we will be addressing are… [read more]

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

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

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. 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.