the expanding role of patient self-education & online communities in molecularly defined...

The Expanding Role of Patient Self-Education & Online Communities

in Molecularly Defined Subgroups “Craig in PA” Uthe,

Online Patient-to-PatientAdvocate

Acquired Resistance Patient Forum

September 6, 2014 | Boston

In ALK, ROS1 & EGFR Lung Cancers

Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston 2

May You Live In Interesting Times! Purportedly a Curse, But For Us It’s Hope!

Rapid Research Progress• Biggest NSCLC breakthroughs in decades• Repeated breakthrough-extensions

Increasingly Accessible Information Support & Fellowship From Peers Worldwide

Enables/Warrants More Self-Advocacy New discoveries take time to be disseminated to and

considered important by local community oncologists• . . . and incorporated into their daily considerations

At certain points in the progress of research, an informed patient might improve their own prospects or comfort• . . . or at least their understanding / acceptance


From This . . . 1980’s

Local community oncologist & nurses, sometimes cancer-specific specialist or 2nd opinions/consultations

Pamphlets/booklets, books, news reports Peers in infusion room and support groups,

although mostly different kinds of cancer Word of mouth via family, friends, friends of friends, . . . Entertainment (TV, movies, novels, docudramas/infomercials)

1990’s Dial-up “Walled Gardens” & Early Forums Curated online pages of information for subscribers

(AOL, Prodigy, …) Online special interest groups: AOL Forums,

Usenet Newsgroup Forums, Email List Groups (ACOR)

Oh no!

Just a start


To This . . . 2000’s+ Ubiquitous Internet Access, World Wide Web,

Databases, and Web Forums Limitless sources of material at your fingertips,

• From anywhere in the world, for anyone in the world• Text, graphic, videos, webinars, social media group chats• incl. latest published research + some conference presentations• incl. misinformation + unproven, disproven, or unimportant material

– Don’t believe everything you read on the Internet!

Consumer-usable online databases of journal abstracts, clinical trials, research reviews, scientific information

Website-based forums / communities• Critical-mass scale frequent contributions of interest• Geographically limited only by common language & Rx/Tx availability• High willingness to share experiences / learnings / citations• Narrowcasting (rare c.) + crowdsourcing new options (not all correct)


Example: An Internet & Research Junkie Initial Dx: Adenocarcinoma, Seemed Like Stage 2

Bum rush to surgeon for lobectomy + wedge + node sampling Read of risk that GGO haze might mean undetected Stage 4 BAC spread

2nd opinion surgeon + oncologist: BAC-Like Stage 4! Anxiety over cancelling surgery, but later confirmed w biopsy

Mutation Testing – Triple-Negative (EGFR, ALK, KRAS) Many weeks waiting, . . . + studying online (profiles, odds, value) Learned of trial testing some experimental others

• Wanted to know name of my enemy, even if no treatment yet• Phila. oncologist redirected me from MDAnderson testing-trial to Alice Shaw, MD PhD

ROS1+ (new one, not-yet-published) Xalkori-for-ROS1 Trial Cancer symptom vanished by 2nd day; still holding up today (almost 3 years!) Paying-It-Forward ever since – Online Patient-to-Patient Advocate

• Still studying online + learning from researchers & peers• Still sharing things to consider, questions to ask oncologists (incl. citations),

experts to ask• Help peers understand driving mutations, targeted Tx’s, odds, trials, side-effects, etc.• Encourage testing where not done yet Found some ROS1’s before widely embraced

Thank You

CancerGRACE

(info + support)

Thank You

Google news, etc.

Thank You

Phila. Mag. online archives

+ ins. co. database + web bios

Thank You

Internet!

Thank You researchers,

peers, NIH PubMed,

ASCO, Quackwatch,

+ countless others


Experienced Peer Support Who can diligently keep up on everything everyday, esp. details

within specific scope? EGFR, ALK, ROS1, Anti-PD-L1/anti-PD-1 Dendritic cell / T-cell / other immunotherapies

Professionals should have the best info and experience, but it takes time . . . For newest promising results to be learned by all oncologists everywhere Not enough time to consider and discuss every obscure possibility Limited time to study & refresh expertise

Amateurs & peers can help prep patients Learn basics of relevant subjects before office visits Identify questions to prompt consideration of newer research or

possibilities


Some Sources – Materials CancerGRACE.org Lungevity.org LungCancerFoundation.org, LungCancerAlliance.org,

FreeToBreathe.org, LCFamerica.org ALKinhibitors.com (ALK & ROS1)

NIH (cancer.gov/cancertopics/types/lung/) & other cancer centers ACS (cancer.net/cancer-types/lung-cancer) U. Penn Oncolink – Lung Cancer

(oncolink.org/types/types1.cfm?c=9) Livestrong.org Macmillan.org.uk

M. Sloan-Kettering Integrative Medicine Search (mskcc.org/cancer-care/integrative-medicine)

QuackWatch.com (or just use Google search + the word “quack”)


Some Sources – Databases & Feeds NIH PubMed (ncbi.nlm.nih.gov/pubmed) Google Scholar (scholar.google.com) ASCO Conference Abstracts (meetinglibrary.asco.org/abstracts) PLoS One (plosone.org) ClinicalTrials.gov

Google News search & emailed alerts (news.google.com) Many journals & news sources offer RSS feeds for use with RSS tool like Feedly,

but more complicated than most people would tolerate, not & selective

NIH’s My Cancer Genome (mycancergenome.org), Genetic Testing Registry (ncbi.nlm.nih.gov/gtr), Cancer Genome Atlas (tcga-data.nci.nih.gov/tcga/), NIH ClinVar (ncbi.nlm.nih.gov/clinvar/)

CoH EGFR Database (cityofhope.org/egfr-mutation-database)

drugs.com/drug_interactions.html


Some Sources – Forums CancerGRACE.org, Lungevity.org Inspire.com ACS – Lung Cancer (csn.cancer.org/forum/129) smartpatients.com

community.macmillan.org.uk/cancer_types/lung-cancer/discussions.aspx whatnext.com/search/questions Other languages/countries? E.g., yuaigongwu.com (in Mandarin, in China)?

Lung Cancer Social Media (Twitter tweetchat events, #LCSM, lcsmchat.wordpress.com)

Don’t forget local in-person support programs Not necessarily cancer type-specific (e.g., local cancer center, Livestrong @ YMCA)


It Takes A Village An individual can make a difference, but . . . No one person knows & remembers everything at

every moment, so . . . Tap the unlimited memory of the Internet Tap the power of the collective community

Available 24x7 – learning, sharing, improving Increasingly research-based comments• Peers can catch each others’ errors, misstatements

Emotional support, comfort tips, fellowship• . . . among peers from very similar circumstances


Internet Caveats Consider Credibility

Web sites & journals are not all equal• Aim for credible ones• Google for “impact factor” of unrecognized journals and compare to impact

factor for others (e.g., NEJM, JAMA JCO).• If seems dubious, is journal real (vs. self-publishing marketing tool)?

Anecdotes often imperfectly remembered; can credit wrong factor Sellers or promoters of unproven “remedies” sometimes set up fake

identities and cite credible-looking but flawed studies Don’t hesitate to ask a forum participant for a source citation or URL link

for their claims

Read Skeptically Usually lab experiment success ≠ clinical trial success

• Odds better when biochemistry is known and pre-clinical tests succeed,and some test-cases preceded you


Don’t Believe Everything You Read

Source: Youtube excerpt from State Farm TV Commercial, 2012

FAIR USE NOTICE: This video may contain copyrighted material. Such material is made available for educational purposes only. This constitutes a 'fair use' of any such copyrighted material as provided for in Title 17 U.S.C. section 107 of the US Copyright Law.


Honor, Respect, Appreciate Rock Stars of Research

Whether breakthrough or incremental

Heroes from experimental trials Past, present, future

Predecessors too early to benefit from new treatments

Each Other


Best Hopes !


MISC. SUPPLEMENTAL MATERIAL


Who In the World Is “Craig in PA”??? 3+ Year NSCLC Combatant

Dx: Stage 4 never-smoker/no-risk-factors ROS1+ adenocarcinoma Tx: Early Xalkori-for-ROS1 trial participant

Passionate About New Lung Cancer Research Specifically newly emerging targeted therapies

• Mutation/fusion-targeted. Immunotherapies. . . . Shifted from life-long passion for broad medical research news (+ aptitude) Retired (due to Dx) from business career (technology svcs, Wharton MBA)

Online Patient-to-Patient Advocate Help fellow patients come up to speed & learn questions to ask Encourage patients to up their game based on real research, and learn from

fellow peers’ experiences / doctors’ advice Paying it forward!

• A huge THANK YOU to all the HEROES and ROCK STARS out there!

3 years this month! Booyah!!!!

(CraiginPA)


Craig in PA Bio “CraiginPA,” Online Patient Advocate is a 3+ year survivor of

stage IV lung cancer thanks to being an early participant in the first clinical trial for ROS1+ lung cancer patients.

Upon diagnosis, despite being a never-smoker in his mid-50’s with no risk factors, he turned his life-long passion for medical research toward lung cancer research and sharing that information with his peers in online forums in the hope that some might be helped as he has been.

Departing from the stereotype of a Wharton MBA with technology business career (albeit with a fair amount of sciences education, too), he found a calling helping others as an online patient-to-patient advocate and has become deeply appreciated by many patients and caregivers.


Patients Becoming Self-Advocates Most Patients Know Little About Lung Cancer When Dx’d

Some prefer to not think much about it, and just do as advised Others (like us?) want to understand (possible coping mechanism?)

and personally seek out new hope for better days, better Tx Info Sources

Specialists (M.D.’s & other medical professionals)• esp. those doing research relevant to you

Reputable Web Sites (summaries, webinars, news)• Just don’t believe everything you read on the Internet!

Discussion Groups & Forums• Peer experiences, prior-learning paid forward, favorite research

citations, social support from people who understand• Ideally for peers who have cancer of the same specific type or with

similar useful attributes Books? Documentaries? – IMO not so much (dated, biased)


More Databases & Feed Tools LOVD (databases.lovd.nl/shared/genes) Sanger COSMIC

(cancer.sanger.ac.uk/cancergenome/projects/cosmic/) IHOP (www.ihop-net.org) . . .

RSS Newsreader tools & PC software: Feedly, InoReader, Newsblurr (via web browser or mobile

phone app) FeedDemon, MS Outlook, Windows Live Mail (MS Windows

applications)

http://www.ihop-net.org/

the expanding role of patient self-education & online communities in molecularly defined...

Documents