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The Expanding Role of Patient Self-Education & Online Communities in Molecularly Defined Subgroups “Craig in PA” Uthe, Online Patient-to-Patient Advocate.

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Presentation on theme: "The Expanding Role of Patient Self-Education & Online Communities in Molecularly Defined Subgroups “Craig in PA” Uthe, Online Patient-to-Patient Advocate."— Presentation transcript:

1 The Expanding Role of Patient Self-Education & Online Communities in Molecularly Defined Subgroups “Craig in PA” Uthe, Online Patient-to-Patient Advocate Acquired Resistance Patient Forum September 6, 2014 | Boston In ALK, ROS1 & EGFR Lung Cancers

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 Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston2

3 From This...  1980’s  Local community oncologist & nurses, sometimes cancer- specific specialist or 2 nd 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, List Groups (ACOR) Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston3 Oh no! Just a start

4 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) Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston4

5 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 2 nd 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 Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston5 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

6 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 Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston6

7 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”) Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston7

8 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 & ed 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 Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston8

9 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, YMCA) Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston9

10 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 Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston10

11 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 Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston11

12 Don’t Believe Everything You Read Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston12 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.

13 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 Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston13

14 Best Hopes ! Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston14

15 MISC. SUPPLEMENTAL MATERIAL Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston15

16 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! Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston16  3 years this month! Booyah!!!! (CraiginPA)

17 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. Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston17

18 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) Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston18

19 More Databases & Feed Tools  LOVD (databases.lovd.nl/shared/genes)  Sanger COSMIC (cancer.sanger.ac.uk/cancergenome/projects/cosmic/)  IHOP (www.ihop-net.org)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) Acquired Resistance Patient Forum | Sept. 6, 2014 | Boston19


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