The world is flat guys, Twitter is awesome! #doctors20 — Ángel González (@angel189) February 2, 2015
Worldwide ConversationOnly on Twitter can people around the world chat with each other in real-time about an issue that impacts so many. Monday February 2nd, a group of 114 people from places as different as South Africa, Belgium, Australia, Spain, United States, Israel, Ireland and more, got together under the #Doctors20 hashtag to discuss seeking health information after a diagnosis. We were honored to be selected to moderate by the hashtag creators, Doctors 2.0 & You, a key digital health conference (Paris, June 4-5, 2015).
ExpectationsIn the beginning expectations for the chat ranged from “finding the gold in the gold mine of Dr. Google” to “learning how to help my patients educate themselves about their chronic illnesses” to “hearing how online info seeking can be used for patient empowerment.” 1,225 tweets later, the rapid fire chat provided many answers, explored many points of view and gave much food for thought.
Tweetchat Highlights and InsightsHere are some highlights. 1) Even though the Pew Interest survey of 2012 found that 72% of Internet users say they looked online for health information within the past year, most people don’t know where to start.
A1: Many patients turn to “Dr. Google”. Important to have online resources that are reputable. Anyone can publish a website. #Doctors20 — CreakyJoints.org (@CreakyJoints) February 2, 20152) Sharing information sources is important to patient researchers.
A1 Recommend pts access articles/sites affiliated w/research institutions, universities and larger “shops” for vetted info first #doctors20 — Katherine K Leon (@katherinekleon) February 2, 2015Here are their recommendations:
- American Society for Clinical Oncology
- Mayo Clinic
- Cleveland Clinic
- American Cancer Society
- .edu and .gov sites
- Major disease organizations and physicians professional organizations
@givoly Q1: Post discharge, reality hits. Often when pts/caregivers start asking questions they didn’t know they had in hospital #doctors20 — Carolyn Thomas (@HeartSisters) February 2, 2015
A1 I think at first it is more about looking for hope & others who have been through it – think looking for hard data comes later #doctors20 — Christina Lizaso (@btrfly12) February 2, 2015
@CMROpen Many questions patients have, docs don’t agree that they’re important. Different POVs for what questions to ask #doctors20 — P. F. Anderson (@pfanderson) February 2, 20154) Many physicians tell their patients to not look for information online.
@RareCandace #Doctors20 ME TOO. They told me not to search online for info that could save my daughter… — Tal Givoly (@givoly) February 2, 2015
@RareCandace #Doctors20 That same advice falls on millions of deaf ears every day. I wonder why wise doctors advise it… — Tal Givoly (@givoly) February 2, 2015
@RareCandace #Doctors20 when a doctor tells you “don’t look online” what do you do? LOOK ONLINE! — Tal Givoly (@givoly) February 2, 2015
CT Patients w/ complicated, rare & chronic conditions often have issues Dr. Google doesn’t address. HCPs can empower them w/ info #doctors20 — Amanda (@LAlupusLady) February 2, 20155) Leaflets, booklets and “goody bags” are not effective.
@givoly When I was discharged from CCU, I came home w. small old growth forest worth of brochures. Overwhelming. Too general. #doctors20 — Carolyn Thomas (@HeartSisters) February 2, 2015The recommended alternative are videos and infographics.
Videos and infographics are great tools for patients. We are in the era of easy-visual-quick info consumption #doctors20 — EGAgenerics (@egagenerics) February 2, 2015
Infographics also work in delivering information. People process info differently and we need different approaches to reach them. #doctors20 — CreakyJoints.org (@CreakyJoints) February 2, 20156) Patients are online researching and need physicians to help them.
@nxtstop1 SO IMPORTANT! Patients are online already, whether their MDs approve or not. Best to steer them to credible resources. #doctors20 — Carolyn Thomas (@HeartSisters) February 2, 20157) Many websites are too general.
@HeartSisters @givoly Exactly. Most “consumer health” info is too general, too simple, or too hard. Need a range for diverse ppl #doctors20 — P. F. Anderson (@pfanderson) February 2, 20158) Doctors can be activists.
Doctors can also be activists 🙂 http://t.co/pZqtOsQ7xJ RT #doctors20 #hcsm @StopDarmkanker — Dr. Luc Colemont (@LucColemont) February 2, 20159) Even though most physicians are not prescribing information, the activist physicians on the chat do. They have several recommendations including physician websites.
My own website for example keeps my own patients informed + I encourage Dr Google used intelligently with advice to ask questions #Doctors20 — Dr David Gotlieb. MD (@rheumatics) February 2, 2015
.@rheumatics that’s what I try to do with @Stopdarmkanker website, social media (Dutch info about prevention of colon cancer) #doctors20 — Dr. Luc Colemont (@LucColemont) February 2, 2015
@givoly I have referred patients to @ACRheum @ArthritisFdn @LupusOrg which have great info for patients #doctors20 — Jonathan Hausmann MD (@hausmannMD) February 2, 201510) Disease specific non-profits should also be part of the information prescription mix.
A2 Dr. Google points people to disease-specific nonprofits, but many don’t know to look for them or pay attn unless dr mentions #doctors20 — Christina Lizaso (@btrfly12) February 2, 2015
@RareCandace hard to get nonprofit info into doctors offices – red tape, risk concerns, etc. #doctors20 — Christina Lizaso (@btrfly12) February 2, 201511) The National Network of Libraries of Medicine has a campaign to encourage information prescribing by physicians. 12) Prescribing general information may not work for many people. Medivizor can be prescribed to patients so they can get information personalized to their condition.
.@Medivizor is a unique method in bringing #tailored #medinfo to the patients/people bed(PC)side #doctors20 @givoly — Dr. Luc Colemont (@LucColemont) February 2, 2015
been harping forever about importance of safe validated credible site RT @givoly Medivizor seems to fit the bill! #Doctors20 — Liam Farrell (@drlfarrell) February 2, 201513) Patients need to be at medical conferences.
.@anetto @ePatientDave YES! Patients need a seat at the table. Policies & research impact us so we should be there. #doctors20 — CreakyJoints.org (@CreakyJoints) February 2, 201514) Some patients would like physicians to prescribe online communities and peer mentors. However, some patients would like some physician monitoring of content.
#doctors20 online comunities are excellent to gain Real advice on your condition #rarediease — Alan Thomas (@alanROYGBIV) February 2, 2015
@RenzaS @HeartSisters @womenofteal @health20Paris @givoly Most online support groups I’ve tried have med pros w/ the condition #doctors20 — P. F. Anderson (@pfanderson) February 2, 201515) Patients feel that they should have access to medical journal articles without the barrier of paying high fees.
@LucColemont Knowledge should be democratic. Down with paywalls! #doctors20 — Annette McKinnon (@anetto) February 2, 201516) Finally
In 2015 people are still dying because of a lack of information 🙁 #medinfo #doctors20 #givoly #hcsm — Dr. Luc Colemont (@LucColemont) February 2, 2015When asked how you can get more information sharing, this physician activist replied
.@doctors20 social media course should be part of the curriculum, most doctors don’t know how social media can be useful #share — Dr. Luc Colemont (@LucColemont) February 2, 2015