Presentations

• Improving Research and Outcomes with Social Media, Genomics Environment and Traits (GET) 2016 Conferences, Harvard Medical School, Boston MA, 26-Apr-2016.
• “Transformers in Healthcare,” 2015 Connected Health Symposium, Boston, MA; 30-Oct-2015.
• “Living with Lung Cancer,” Acquired Resistance in Lung Cancer Patient Forum; San Francisco CA; 3-Oct-2015.
• “Supporting Lung Cancer Survivors – Living with and Beyond Lung Cancer,” World Conference on Lung Cancer, Denver CO, 9-Sep-2015.
• Press Conference, World Conference on Lung Cancer, Denver CO, 6-Sep-2015
• “Hope on the Horizon: ASCO 2015,” Addario Lung Cancer Living Room with Guneet Walia MD, 21-Jun-2015.
• “The Value of Patient Engagement,” Virginia Mason Board of Directors meeting, Seattle WA, 14-Jul-2015.
• National Cancer Institute Lung Cancer SPORE Meeting, Washington DC, 16-Jun-2015.
• LUNG FORCE Expo, Renton WA, 27-Mar-2015.
• “Epatients on the Front Lines: Precision Medicine, the FDA, and Me,” 2015 Moores Cancer Center Industry/Academia Translational Oncology Symposium, San Diego CA, 19-Feb-2015 (blog post with slides here)
• “A Lung Cancer ePatient Story,” Virginia Mason Medical Center Grand Rounds, Seattle WA, 7-Nov-2014.
• Breathe Deep Seattle Walk, 8-Aug-2014.
• “Finding My Voice,” Stories of Survival hosted by Smart Patients and Story Collider, San Carlos CA, 31-Jul-2014.
• “Making Lung Cancer Visible,” 2014 Stanford Medicine X conference as ePatient Scholar, Palo Alto CA, 07-Sep-2014.
• LUNG FORCE Walk Kick Off , Seattle WA. 29-Jan-2014. (I’m the third survivor to speak).

Conference Panelist

• GET (Genomics Environments Traits) 2016, Harvard Medical School, 25-Apr-2016.
• “The Changing Landscape of Lung Cancer Research and Treatment,” Google Hangout on Air co-sponsored by National Cancer Institute and Lung Cancer Social Media, 19-Nov-2015. (Moderator)
• “Exploration of Connected Health for Improved Cancer: Outcomes by the President’s Cancer Panel,” Connected Health Symposium, Boston, MA, 29-Oct-2015
• “Tranformers in Healthcare,” Connected Health Symposium, Boston, MA, 30-Oct-2015
• Palliative Care Quality Measurement Summit, Seattle WA, 15-May-2015.
• President’s Cancer Panel Workshop, San Francisco CA 26-Mar-2015 and Chicago IL 9-Jul-2015.
• “Emerging Platforms for Person-Centered, Community-Wide Care Coordination: Needs, Challenges, and Solutions,” 2014 Workshop on Interactive Systems in Healthcare (WISH), Washington DC, 15-Nov-2014.

Videos

• Miracle drug trial saved woman’s life, 9News (Denver NBC News affiliate), 16-May-2016.
• Lung Cancer Awareness Month 2015: North America by IASLC, 6-Nov-2015.
• Janet Freeman-Daily: Patient-to-Patient Power. Recorded by Patient Power at 2015 World Conference on Lung Cancer on 7-Sep-2015. Published 10-Nov-2015. (Login to Patient Power to see transcript)
• “November is Lung Cancer Awareness Month” by Global Resources for Advancing Cancer Education (GRACE), Nov-2015.
• Importance of Genomic Testing for Lung Cancer.  Recorded by Cure Today magazine at ASCO 2015 Annual Meeting on 1-Jun-2015.
• Why Patients Should Attend the ASCO Meeting. Recorded by Cure Today magazine at ASCO 2015 Annual Meeting on 1-Jun-2015.

Articles and Publications

• Coronavirus Diaries: I Have Lung Cancer and a Cough. I Can’t Get a Test. (Slate, 2020)
• Characteristics of Patients With ROS1+ Cancers: Results From the First Patient-Designed, Global, Pan-Cancer ROS1 Data Repository (JCO Oncol Pract 2019-12)

• The roles of patient groups in fostering cancer research (Nature Reviews Clin Oncol 2019-12)
• Organizing Online Health Content: Developing Hashtag Collections for Healthier Internet-Based People and Communities (JCO Clinical Cancer Informatics, 2019-06)
• Patient engagement on claims-registry reports of cost and quality (JCO 2017-10)
• Clinical Pathways and the Patient Perspective in the Pursuit of Value-Based Oncology Care (ASCO 2017 Educational Book)
• Blogs and content for #LCSM Chat website (as Gray Connections).
• The Connected Cancer Patient: Future Vision and Recommendations. Coauthored with Corrie Painter and Stacey Tinianov. Blog for 7-Jul #HCLDR Chat on Twitter, 3-Jul-2015.
• Content on LVNG With Lung Cancer site.
• Can I fly when I have cancer?  in Cure Today magazine, 20-Apr-2015.
• Data sharing for research and care. Coauthored with Colin Hung. Blog for 17-Mar#HCLDR Chat on Twitter, 14-Mar-2015.
• Tell the FDA to withdraw its proposed regulations for laboratory developed tests (LDTs). Change.org petition, Jan-2015.
• Tackling the stigma of lung cancer — and showing the real faces of the disease. Guest blog for Stanford Scope, 17-Nov-2014.
• Platforms for Community Wide Care Coordination. Blog for 28-Oct #HCLDR Chat on Twitter, 25-Oct-2014.
• Meeting the Chemist. Guest blog for American Society of Clinical Oncology, 15-Jul-2014.
• Independent Lung Cancer Patient Advocates submission to NCCN (requesting change in NSCLC Guidelines), Liaison, 25-Jun-2014.
• Provide coverage for Lung Cancer Screening with LDCT. Change.org petition, Feb-2014.
• “Medicare should cover low-dose CT screening for lung cancer,” Seattle Times opinion, 10-Jun-2014.
• Why I’m in a Clinical Trial. Guest blog for Consano, 05-Nov-2013.
• “Non-Native Species,” Analog magazine, Jan/Feb 2011. Hard science fiction short story.
• “Progeny,” 10Flash Quarterly April 2010. Flash science fiction story.
• “Preserving the Memory,” Analog magazine Jul/Aug 2009. Article on current Alzheimer’s research. “New Horizon School Annual Report 2008,” 11/2008.
• “Her Hands,” Today’s Caregiver magazine (caregiver.com). Poem.
• Grant, finance, technical, marketing and development documents for New Horizon School, a non-profit in Renton, WA, 2000-2009.
• “Invest in Self-Esteem,” The Toastmaster magazine, 02/1994.
• New business proposals, systems engineering analysis, and technical marketing for Hughes Aircraft spacecraft and The Boeing Company defense and space projects, 1981-1998.
• Design considerations for a one-kilometer antenna stick. Proceedings of AIAA/ASME/ASCE/AHS 28th SDM Conference, 04/1987.
• “Design of one-kilometer-long antenna sticks and support structure for a geosynchronous satellite”. Caltech Engineer thesis.
• “Fiber-reinforced syntactic foam composites and method of forming same,” US Patent 4,595,623 granted 6/17/1986. New material developed as co-inventor while at Hughes Aircraft.

Cited In Media

• Take It Personally: How decoding your genes might unlock the future of health care, 5280 Magazine, January 2016.
• “Researching your cancer online: dive in or steer clear?” Hutch News, 10-Feb-2016
• “This is the future of oncology,” Hutch News, 4-Mar-2016.
• “Collaborating to boost value-based care, Hutch News,” 16-Apr-2016.
• Super Patient: Janet Freeman-Daily Joins a Clinical Trial—and Beats the Odds on Lung Cancer, Cancer Commons, 2-Nov-2015.
• Seattle’s Most Influential People of 2015, Seattle Magazine, Nov-2015.
• Doctors use Twitter to advance health care messaging. Medical Express, 9-Jun-2015.
• “‘Second Screen’ for Health Care Messaging: Looking for Lessons from #CancerFilm,” SciComm, 9-Jun-2015.
• Patients take a starring role to define, shape palliative care, article by Fred Hutchinson Cancer Research Center, 19-May-2015.
• The Lung Cancer Blame Game, article by Fred Hutchinson Cancer Research Center, 7-May-2015.
• How A Group Of Lung Cancer Survivors Got Doctors To Listen, NPR article about the patient-initiated NCCN Guidelines submission to which I contributed, 1-Mar-2015.
• From patient centred to people powered: autonomy on the rise. The BMJ, 10-Feb-2015. (My blog post “A lung cancer epatient story” is listed in the references)
• Is Cancer the “Best Death”? Huffington Post, 07-Jan-2015. (My blog post “Dying the best death: it’s not cancer” is mentioned in the article.)
• Tech Totems: Mementos motivate and inspire alumni. Article in MIT Technology Review June 17, 2014. Turquoise Takeover: Seattle landmarks shine light on lung cancer. Interview on King 5 (NBC News in Seattle) about my lung cancer at Seattle’s Lung Force event on Tuesday, May 13, 2014.
• Patient-Generated Data: Is It the Future of Healthcare? One of eight panelists in Stanford Medicine X Live! Google hangout on Tuesday, May 6, 2014.
• Cancer survivors still struggle with ‘chemo brain’. Interviewed in health news segment which aired March 17, 2014, on King 5 News in Seattle.
• Social Media Users Willing To Share Health Data Despite Concerns About Privacy. Interviewed regarding participation in online health forums for article published March 10, 2014, on iHealthBeat.

Updated 5-Jan-2016