I had really wanted to participate in this Twitter chat today (#patientchat), on how patients find clinical trials, decide to engage with them, what resources they use, their expectations, and their concerns. I missed the chat, but it is archived in Symplur, so I was able to scroll through, search, dig, prowl around, and find my favorite bits. Since I went through all of that, I thought I’d share it. I’d recommend reading more deeply in the transcript for anyone in clinical trial research or recruitment, patients with basically any kind of diagnosis (as Mighty Casey eloquently said), people interested in translational medicine (where patients play a crucial role), as well as clinicians. Evidently, patients consider clinical trial recommendation from the primary care clinicians to be an obligation, not an optional part of providing care. Who knew? I bet we could automate relevant clinical trial notifications in EHR and as part of clinic visit prep. Why not? Explore below and see what other surprises and creative nuggets appear.
T1 Resource: National Institutes of Health @NIH – Learn About Clinical Studies Page https://t.co/VRydjwOKk4 #patientchat
— Christina Lizaso (@btrfly12) June 12, 2015
T1 Biggest misconception? That you will not get real treatment. No one ever gets less than normal standard of care. #patientchat
— AnneMarie Ciccarella (@chemobrainfog) June 12, 2015
Yes! This is a huge barrier and educating around this is so important. #patientchat https://t.co/L32ZBvLOoD
— TrialReach (@TrialReach) June 12, 2015
T1 Visual of the phases of clinical trial research: http://t.co/7KdthlOa2p #patientchat
— Christina Lizaso (@btrfly12) June 12, 2015
T1: one of my go-to patient voices on bioethics in trials is Jean Burns @ridemytrike http://t.co/o7JJB18h8R #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
@abrewi3010 This is so impt. Privacy, data rights, sooo impt. Increasingly I want to know if data will be published open access #patientchat
— Isabel Jordan (@seastarbatita) June 12, 2015
T1 I also want to know if rsrchers buy into http://t.co/f87nfsF7fU Publish results regardless of findings. #patientchat
— Isabel Jordan (@seastarbatita) June 12, 2015
A2: I go a step further, recommend anyone can get involved in bioscience via @SciStarter http://t.co/o7JJB18h8R #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
A2: Anyone who's got ANY diagnosis should start #clinicaltrial stalking, ask their clinical team(s) to join in the stalk. #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
How do patients find out about #ClinicalTrials? Is there a database or do they rely on physician? #PatientChat
— Janet M. Kennedy (@GetSocialHealth) June 12, 2015
A2: Bottom line, create your own Citizen Science movement by scrubbing http://t.co/OUfSgy2d58 weekly, share what you find. #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
A2: Anyone who's got ANY diagnosis should start #clinicaltrial stalking, ask their clinical team(s) to join in the stalk. #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
@GetSocialHealth go to http://t.co/krhJHTk41S most docts don't recommend trials #patientchat
— JeanBurns (@ridemytrike) June 12, 2015
@GetSocialHealth https://t.co/elPIp4nQEe #patientchat
— Melissa VanHouten (@melissarvh) June 12, 2015
OK – That answers my question. #PatientChat http://t.co/iQQDNVTkLz
— Janet M. Kennedy (@GetSocialHealth) June 12, 2015
T2 http://t.co/U2NWdpLR7V is very cumbersome to navigate. Many companies in this space trying to make "patient friendly" #patientchat
— AnneMarie Ciccarella (@chemobrainfog) June 12, 2015
Proud to be one! So key to have clear info on trials – http://t.co/08a2ipRjwJ is tough for most people #patientchat https://t.co/QqSL4WrBV4
— TrialReach (@TrialReach) June 12, 2015
Absolutely! Good to know ALL options out there #patientchat https://t.co/aJ6gYZhKMQ
— TrialReach (@TrialReach) June 12, 2015
@abrewi3010 @patientchat I wrote a blog post on research presented at #ASCO15 http://t.co/BrvQit7UJo #patientchat
— Women of Teal (@womenofteal) June 12, 2015
Trial participation a very personal decision and each person should consider pros and cons. Do research. #patientchat
— Christina Lizaso (@btrfly12) June 12, 2015
A3: CITIZEN SCIENCE! If "pro science" isn't serving up answers for you, roll your own =) #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
@abrewi3010 @patientchat I wrote a blog post on research presented at #ASCO15 http://t.co/BrvQit7UJo #patientchat
— Women of Teal (@womenofteal) June 12, 2015
T1 #patientchat You Can Make a Difference https://t.co/PBP0Aazwqq via @YouTube
— Community Engagement (@mayoclinic_cenr) June 12, 2015
.@abrewi3010 Every time I say "citizen science, roll your own" I think of @alderbrett 'cause he did EXACTLY that. #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
Cation though… A researcher's goals are not the same as your doctor's. Some differences here, @NIMHgov pic.twitter.com/HZhY2kwDo5 #patientchat
— Elin Silveous (@ElinSilveous) June 12, 2015
T3 Check out @rarediseasefdn #Microgrants Grants determined by rsrchr & pts together. http://t.co/o8UJT996Ka huge variety #patientchat
— Isabel Jordan (@seastarbatita) June 12, 2015
Informed consent I've experienced is a nightmare. Easier to build Ikea furniture. #patientchat
— Fabio Gratton (@skypen) June 12, 2015
T4: Some groups w/trial matching services: @ResearchMatch @CureClickTeam @TrialReach @EmergingMed @cureLauncher @smart_patients #patientchat
— Christina Lizaso (@btrfly12) June 12, 2015
Yes! Great to see patient-friendly trial platforms like @TrialReach and @CISCRP also advocates for better education #patientchat
— CureClick (@CureClickTeam) June 12, 2015
Agreed. Willing to beta test software, why not my hardware? #patientchat https://t.co/7j4OpV3sSK
— TheInedibleF (@TheInedibleF) June 12, 2015
Well said MT @btrfly12: Trial participation a very personal decision & each person should consider pros and cons. Do research. #patientchat
— Women of Teal (@womenofteal) June 12, 2015
.@theNCI Learn About Clinical Trials page w/ link to printout list of ?’s to ask ur dr: http://t.co/f9sum6yO49 #patientchat
— Christina Lizaso (@btrfly12) June 12, 2015
T4 Canada launches a clinical trial asset map http://t.co/oATfwjJ6Lq #patientchat
— Annette McKinnon (@anetto) June 12, 2015
T4: There are tons of great resources out there. One of our favorites is http://t.co/wy1rPOSt9Y. #patientchat
— TrialReach (@TrialReach) June 12, 2015
another group is Partners in Research http://t.co/MA0czRSkK3 #patientchat
— Christina Lizaso (@btrfly12) June 12, 2015
T4: For info about Mayo Clinic research, check out http://t.co/4o61CDYnAP. @mayoclinic_cenr #patientchat
— Mayo Clinic Studies (@MayoStudies) June 12, 2015
A5 attend conferences like #medx with the goal of networking. Every patient story adds value to trial/research #patientchat
— Alan Brewington (@abrewi3010) June 12, 2015
Absolutely – share what you know! You never know who it may help. #patientchat https://t.co/Y6sxUTkaAs
— TrialReach (@TrialReach) June 12, 2015
A1/2/3/4/5: If you want a powerful story of why #clinicaltrials can be EPIC AMAZEBALLZ, here ya go: https://t.co/A8NQ7DsjPJ #patientchat
— Casey Quinlan (@MightyCasey) June 12, 2015
A5: What @abrewi3010 said! More info on Arthritis Power here—-> http://t.co/8nF7efott7 #PatientChat pic.twitter.com/Aj22vbeqgJ
— CreakyJoints.org (@CreakyJoints) June 12, 2015
Good for researchers like me to sit in on chats like these to learn about patient values- then we can apply what we’ve learned #patientchat
— Sarah Gilbert (@_sgilbert_) June 12, 2015
T5 I think as advocates we need to know what we aren't -more important than who we are. #patientchat
— AnneMarie Ciccarella (@chemobrainfog) June 12, 2015
CT The only way toward better therapies is through trials. We all need a seat at the table moving forward #patientchat
— Corrie Painter, PhD (@corrie_painter) June 12, 2015
CT always advocate if you want to participate in trial. Be aware of privacy & data ownership issues but also bring curiosity #patientchat
— Alan Brewington (@abrewi3010) June 12, 2015
THIS! @_sgilbert_: Good for researchers like me on chats like these to learn abt patient values-can apply what we’ve learned #patientchat
— AnneMarie Ciccarella (@chemobrainfog) June 12, 2015
Seat at the table – or we turn the damned table over #patientchat https://t.co/z224KYASOP
— Bob Tufts (@TuftsB) June 12, 2015
T5 pts should be involved in study design. Setting rsrch goals/endpoints. We know our community's needs. We make rsrch relevant #patientchat
— Isabel Jordan (@seastarbatita) June 12, 2015
CT: educate yourself! There are so many options out there so arm yourself with information #patientchat
— TrialReach (@TrialReach) June 12, 2015
We hope you’ll sign up here to receive updates and news http://t.co/BXK6857vOS #patientchat
— Patient Chat (@patientchat) June 12, 2015
My fave concept of day: @MightyCasey "Roll your own…" http://t.co/P6yZAvj0Nu. That's gotta be my next business! #patientchat
— Fabio Gratton (@skypen) June 12, 2015
The next Empowered #PatientChat is Fri 6/26 1pmET Topic: Where can I get the latest science that matters to me? w/ @givoly of @medivizor
— Patient Chat (@patientchat) June 12, 2015
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