#whywedoresearch Transcript

Healthcare social media transcript of the #whywedoresearch hashtag.
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ClinEdge @ClinEdge
Are you ready to chat?? Take a moment to say #hello - we will be starting our conversation soon! #WhyWeDoResearch https://t.co/LmxtciCo0z
GuideStar® @AskGuideStar
RT @ClinEdge: Are you ready to chat?? Take a moment to say #hello - we will be starting our conversation soon! #WhyWeDoResearch https://t.c…
BTC Network @BTC_Network
RT @ClinEdge: Are you ready to chat?? Take a moment to say #hello - we will be starting our conversation soon! #WhyWeDoResearch https://t.c…
carmen villar @carmenvillarb
Vienes a #Whywedoresearch https://t.co/WSCX340Fdn ? @abogadoenferme @anamarsu @VirgiForero @albertgranero @lafuente_nieves @Nanigranero @SerafinCuidando @LaFactCuidando @la_oveja_negra @GloryPICC @a_mese_te
carmen villar @carmenvillarb
Los que ya lo conocen repiten @salusplay @ValdespinaC @amenesesmonroy @PrescripEnferm @jrsanchezisla @EnferEvidente @Ebevidencia #Whywedoresearch https://t.co/WSCX340Fdn
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Are you ready to chat?? Take a moment to say #hello - we will be starting our conversation soon! #WhyWeDoResearch https://t.c…
ClinEdge @ClinEdge
Remember to include the hashtag, #WhyWeDoResearch in each of your responses!
R&D Southampton @RDsouthampton
#NHS70 #whywedoresearch https://t.co/vlSqigNHwt
nobism @nobismhealth
RT @carmenvillarb: #Whywedoresearch https://t.co/WSCX340Fdn @maytemoren @DorisGrinspun @maruzafa @serranitopintor @AmaiaOrmij @falicamacho
nobism @nobismhealth
RT @Jaymazin1972: #whywedoresearch https://t.co/JJpqo5WAFp
nobism @nobismhealth
RT @ClinEdge: Are you ready to chat?? Take a moment to say #hello - we will be starting our conversation soon! #WhyWeDoResearch https://t.c…
nobism @nobismhealth
RT @carmenvillarb: Vienes a #Whywedoresearch https://t.co/WSCX340Fdn ? @abogadoenferme @anamarsu @VirgiForero @albertgranero @lafuente_niev
ENHerts NHS Research @ENHertResearch
RT @NIHRCRNEastern: Spotted @NHSRDForum today! our Eastern colleague @researchPhil from @ENHertResearch highlighting the patient experience…
nobism @nobismhealth
RT @carmenvillarb: Los que ya lo conocen repiten @salusplay @ValdespinaC @amenesesmonroy @PrescripEnferm @jrsanchezisla @EnferEvidente @Eb
nobism @nobismhealth
RT @ClinEdge: Remember to include the hashtag, #WhyWeDoResearch in each of your responses!
nobism @nobismhealth
RT @RDsouthampton: #NHS70 #whywedoresearch https://t.co/vlSqigNHwt
Hazel A Smith (PhD) @smithhazelann
Hi, Hazel here. Research Coordinator for #PedsICU #WhyWeDoResearch https://t.co/S1Ua78mH2l
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Remember to include the hashtag, #WhyWeDoResearch in each of your responses!
Ben Ainsworth @benainsworth
RT @RDsouthampton: #NHS70 #whywedoresearch https://t.co/vlSqigNHwt
NuriaDeArgila @NuriaDeArgila
RT @carmenvillarb: Vuestra opinión es importante #Whywedoresearch https://t.co/WSCX340Fdn @ncuxart @ArnedoFerrer @bflasquetty @PazMompart @…
ClinEdge @ClinEdge
Here is question 1! Please start your response with "A1" and include #WhyWeDoResearch https://t.co/p5MQuvzoe6
CRIPACC UH @CRIPACC1
RT @researchPhil: Thanks to all who came to joint talk with @drnatpat on developing research talent to enhance patient experience & outcome…
Carlos Valdespina @ValdespinaC
RT @carmenvillarb: Los que ya lo conocen repiten @salusplay @ValdespinaC @amenesesmonroy @PrescripEnferm @jrsanchezisla @EnferEvidente @Eb
GuideStar® @AskGuideStar
RT @ClinEdge: Here is question 1! Please start your response with "A1" and include #WhyWeDoResearch https://t.co/p5MQuvzoe6
BTC Network @BTC_Network
RT @ClinEdge: Here is question 1! Please start your response with "A1" and include #WhyWeDoResearch https://t.co/p5MQuvzoe6
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Here is question 1! Please start your response with "A1" and include #WhyWeDoResearch https://t.co/p5MQuvzoe6
SalusPlay @salusplay
RT @carmenvillarb: Los que ya lo conocen repiten @salusplay @ValdespinaC @amenesesmonroy @PrescripEnferm @jrsanchezisla @EnferEvidente @Eb
Hazel A Smith (PhD) @smithhazelann
Involve patients (& for me) their families from the very start - with developing the research question #WhyWeDoResearch https://t.co/SkORtzNmJO
Derek Stewart @DerekCStewart
@ClinEdge Hello @ClinEdge - Derek here - will try to stay for some of the #whywedoresearch chat
BTC Network @BTC_Network
RT @smithhazelann: Involve patients (& for me) their families from the very start - with developing the research question #WhyWeDoResearch
Ben Ainsworth @benainsworth
RT @RDsouthampton: #NHS70 #whywedoresearch https://t.co/vlSqigNHwt
Hazel A Smith (PhD) @smithhazelann
A1: ask patients what they want in a research protocol. Also, what worked well in previous studies & what didn't go so well #WhyWeDoResearch https://t.co/SkORtzNmJO
Hazel A Smith (PhD) @smithhazelann
RT @DerekCStewart: @ClinEdge Hello @ClinEdge - Derek here - will try to stay for some of the #whywedoresearch chat
carmen villar @carmenvillarb
@igonzalezh @ChemaCepeda @silviaperezgon @ enfermera2pto0 @AlberGonGar @sonia_retamar @jesterhanny @miguel_garvi @_SoniaPalencia @Erreleo @jobgosan @ClaraAbellan @jtorosantiago #Whywedoresearch https://t.co/WSCX340Fdn Cuento con vosotros!
GuideStar® @AskGuideStar
RT @smithhazelann: A1: ask patients what they want in a research protocol. Also, what worked well in previous studies & what didn't go so w…
BTC Network @BTC_Network
RT @smithhazelann: A1: ask patients what they want in a research protocol. Also, what worked well in previous studies & what didn't go so w…
Derek Stewart @DerekCStewart
@RDsouthampton @benainsworth @UHSFT @SouthamptonBRC @MRC_LEU And the patients and their families are an essential and key part of that interdisciplinary team #WhyWeDoResearch
Marcos Lastra Felix @MarcosLastraF
RT @carmenvillarb: #Whywedoresearch https://t.co/WSCX340Fdn cuento con vosotros! @vgallegog76 @Lolamont @victoriacge @aldarecas @TablonenBl
ClinEdge @ClinEdge
@smithhazelann A1: Yes, we agree! Collaborating with patients during the protocol development process key to achieving patient-centricity in your trial. #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @smithhazelann A1: Yes, we agree! Collaborating with patients during the protocol development process key to achieving patien…
Vicente Gallego @vgallegog76
RT @carmenvillarb: #Whywedoresearch https://t.co/WSCX340Fdn cuento con vosotros! @vgallegog76 @Lolamont @victoriacge @aldarecas @TablonenBl
GuideStar® @AskGuideStar
RT @ClinEdge: @smithhazelann A1: Yes, we agree! Collaborating with patients during the protocol development process key to achieving patien…
BTC Network @BTC_Network
RT @ClinEdge: @smithhazelann A1: Yes, we agree! Collaborating with patients during the protocol development process key to achieving patien…
Hazel A Smith (PhD) @smithhazelann
@ClinEdge How do you approach patients for involvement in research protocols? Is this through clinics, wards or community settings? #whywedoresearch
Lilly Trials @LillyTrials
A1. As with any disease state, involving patients earlier is better. #whywedoresearch
Siobhan Parslow-Williams @PwSiobhan
Shameless self-promotion and how to ‘Get Out There’ funny, brilliant & inspiring talk by @PDarbyshire @NHSRDForum #RDF2018 #Whywedoresearch https://t.co/nu5zdgI4kB
Hazel A Smith (PhD) @smithhazelann
RT @LillyTrials: A1. As with any disease state, involving patients earlier is better. #whywedoresearch
ClinEdge @ClinEdge
Question 2 is about #branding and #advertising! Please start your response with "A2" and include #WhyWeDoResearch https://t.co/hVSAgGfjnn
Angeles celda @mancem
Encantada de participar #whywedoresearch y paso el relevo a @veronicamunyoz @elechover @gelestur @UrgeInvest @laurinchi79 @aibard1 @cfllatas @geibsan https://t.co/Bdt0H8Bsuh
GuideStar® @AskGuideStar
RT @ClinEdge: Question 2 is about #branding and #advertising! Please start your response with "A2" and include #WhyWeDoResearch https://t.c…
BTC Network @BTC_Network
RT @ClinEdge: Question 2 is about #branding and #advertising! Please start your response with "A2" and include #WhyWeDoResearch https://t.c…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Question 2 is about #branding and #advertising! Please start your response with "A2" and include #WhyWeDoResearch https://t.c…
Blanca Fdz-Lasquetty @bflasquetty
RT @carmenvillarb: Vuestra opinión es importante #Whywedoresearch https://t.co/WSCX340Fdn @ncuxart @ArnedoFerrer @bflasquetty @PazMompart @…
Angeles celda @mancem
RT @carmenvillarb: #whywedoresearch de 2018 anímate y participa, más información en https://t.co/yGZ0kziM8w @Ana_Gieryc @MarvinHarris76 @C
ClinEdge @ClinEdge
@smithhazelann Great Q! We find that reaching patients through advocacy groups, physician contacts, and online social platforms is helpful! Advocacy events (runs, walks, etc.) are also a great avenue! #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: @smithhazelann Great Q! We find that reaching patients through advocacy groups, physician contacts, and online social platfor…
Derek Stewart @DerekCStewart
@ClinEdge So, first of all, it is okay to start from whichever point you are at in the research. Ideally you should start before early to sound out the concepts. People with rare condition are, usually incredibly well informed about treatments therefore equal partners #whywedoresearch
BTC Network @BTC_Network
RT @ClinEdge: @smithhazelann Great Q! We find that reaching patients through advocacy groups, physician contacts, and online social platfor…
RBCH Research @RBCH_Research
This tiny #wireless device inserted between the heart and the lungs measures pressure to help prevent heart failure. Thanks to our Cardiologist Dr Chris Critoph and the #Cardiology team! Watch on iplayer from 15:34 https://t.co/6149hMEd88 #whywedoresearch https://t.co/WlYuem6YSr
Hazel A Smith (PhD) @smithhazelann
A2: interesting question. It is something I wouldn't have taught of. Always linked branding with industry. How effective do you find it with encouraging patient involvement? #whywedoresearch https://t.co/1HdjF0JyNq
Hazel A Smith (PhD) @smithhazelann
RT @DerekCStewart: @ClinEdge So, first of all, it is okay to start from whichever point you are at in the research. Ideally you should star…
GuideStar® @AskGuideStar
RT @DerekCStewart: @ClinEdge So, first of all, it is okay to start from whichever point you are at in the research. Ideally you should star…
BTC Network @BTC_Network
RT @DerekCStewart: @ClinEdge So, first of all, it is okay to start from whichever point you are at in the research. Ideally you should star…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @smithhazelann Great Q! We find that reaching patients through advocacy groups, physician contacts, and online social platfor…
GuideStar® @AskGuideStar
RT @smithhazelann: A2: interesting question. It is something I wouldn't have taught of. Always linked branding with industry. How effective…
Blanca Fdz-Lasquetty @bflasquetty
RT @carmenvillarb: Ya tenemos carte gracias a @ferenfer ayudas a difundir? #whywedoresearch , la cita de este año este próximo jueves. Te e…
BTC Network @BTC_Network
RT @smithhazelann: A2: interesting question. It is something I wouldn't have taught of. Always linked branding with industry. How effective…
David Montgomery @dmonty007
@DerekCStewart @ClinEdge "People with rare condition are, usually incredibly well informed about treatments therefore equal partners" #whywedoresearch https://t.co/3XtV38niDg
Yeray Santana @SantanaYeray
RT @carmenvillarb: Anímate y participa #WhyWeDoResearch @AENTDE @charofflo @Angelm105 @tr3s3rr3s @Bebra_enf @AntonioBazan1 @esgosu @Vitrubi
Hazel A Smith (PhD) @smithhazelann
@ClinEdge Would advocacy groups keep in contact with you to let you know when events are on or do you join groups as members? #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @dmonty007: @DerekCStewart @ClinEdge "People with rare condition are, usually incredibly well informed about treatments therefore equal…
BTC Network @BTC_Network
RT @dmonty007: @DerekCStewart @ClinEdge "People with rare condition are, usually incredibly well informed about treatments therefore equal…
Siobhan Parslow-Williams @PwSiobhan
RT @NHS_NSResearch: Access to Medicines in the U.K.: How can we fix it? Thought provoking talk by Leslie Galloway @NHSRDForum @EthicalMedi
Dr Jackie McRae @daisy_project
RT @RCSLTResearch: Keep an eye on #WhyWeDoResearch this week #slpeeps #ClinAcSLT https://t.co/iNDaRdYw7P
ClinEdge @ClinEdge
@smithhazelann A2: We find it incredibly effective! You want to ensure that the language you use in any marketing materials is ‘speaking their language’ - it should be phrased sensitively, accurately (of course!), and empowering #WhyWeDoResearch
ClinEdge @ClinEdge
@DerekCStewart Yes, we agree starting early is always a great approach. An in-person or digital patient panel is a great way to achieve this. We want to ensure the language used resonates directly with the patient. #whywedoresearch
GuideStar® @AskGuideStar
RT @ClinEdge: @smithhazelann A2: We find it incredibly effective! You want to ensure that the language you use in any marketing materials i…
BTC Network @BTC_Network
RT @ClinEdge: @smithhazelann A2: We find it incredibly effective! You want to ensure that the language you use in any marketing materials i…
ClinEdge @ClinEdge
RT @dmonty007: @DerekCStewart @ClinEdge "People with rare condition are, usually incredibly well informed about treatments therefore equal…
GuideStar® @AskGuideStar
RT @ClinEdge: @DerekCStewart Yes, we agree starting early is always a great approach. An in-person or digital patient panel is a great way…
BTC Network @BTC_Network
RT @ClinEdge: @DerekCStewart Yes, we agree starting early is always a great approach. An in-person or digital patient panel is a great way…
IRNN @Irish_RNN
#WhyWeDoResearch tweetchats on 'Patient recruitment for rare diseases study' is happening now! https://t.co/D1YuhtneZE
GuideStar® @AskGuideStar
RT @Irish_RNN: #WhyWeDoResearch tweetchats on 'Patient recruitment for rare diseases study' is happening now! https://t.co/D1YuhtneZE
BTC Network @BTC_Network
RT @Irish_RNN: #WhyWeDoResearch tweetchats on 'Patient recruitment for rare diseases study' is happening now! https://t.co/D1YuhtneZE
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @smithhazelann A2: We find it incredibly effective! You want to ensure that the language you use in any marketing materials i…
Lilly Trials @LillyTrials
A2. We've worked with patient communities to answer questions like: What is it like living with this rare disease? What are patients and caregivers everyday experiences? These are key considerations. #whywedoresearch
Vicente Gallego @vgallegog76
RT @carmenvillarb: #Whywedoresearch https://t.co/WSCX340Fdn cuento con vosotros! @vgallegog76 @Lolamont @victoriacge @aldarecas @TablonenBl
Hazel A Smith (PhD) @smithhazelann
@ClinEdge Is this something that is done by @ClinEdge or patients or both? #WhyWeDoResearch
ClinEdge @ClinEdge
We are loving your responses! Here is question 3. Start replies with "A3" and include #WhyWeDoResearch! #raredisease https://t.co/AhyROYB0NJ
ClinEdge @ClinEdge
RT @Irish_RNN: #WhyWeDoResearch tweetchats on 'Patient recruitment for rare diseases study' is happening now! https://t.co/D1YuhtneZE
Hazel A Smith (PhD) @smithhazelann
RT @LillyTrials: A2. We've worked with patient communities to answer questions like: What is it like living with this rare disease? What ar…
GuideStar® @AskGuideStar
RT @LillyTrials: A2. We've worked with patient communities to answer questions like: What is it like living with this rare disease? What ar…
Hazel A Smith (PhD) @smithhazelann
RT @Irish_RNN: #WhyWeDoResearch tweetchats on 'Patient recruitment for rare diseases study' is happening now! https://t.co/D1YuhtneZE
BTC Network @BTC_Network
RT @LillyTrials: A2. We've worked with patient communities to answer questions like: What is it like living with this rare disease? What ar…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @DerekCStewart Yes, we agree starting early is always a great approach. An in-person or digital patient panel is a great way…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: We are loving your responses! Here is question 3. Start replies with "A3" and include #WhyWeDoResearch! #raredisease https://…
GuideStar® @AskGuideStar
RT @ClinEdge: We are loving your responses! Here is question 3. Start replies with "A3" and include #WhyWeDoResearch! #raredisease https://…
BTC Network @BTC_Network
RT @ClinEdge: We are loving your responses! Here is question 3. Start replies with "A3" and include #WhyWeDoResearch! #raredisease https://…
NuriaDeArgila @NuriaDeArgila
RT @carmenvillarb: Ya tenemos carte gracias a @ferenfer ayudas a difundir? #whywedoresearch , la cita de este año este próximo jueves. Te e…
Alicia C. Staley @stales
RT @LillyTrials: A2. We've worked with patient communities to answer questions like: What is it like living with this rare disease? What ar…
UHS Jobs @UHS_Jobs
RT @RDsouthampton: #NHS70 #WhyWeDoResearch https://t.co/8pwCvJVoTT
Derek Stewart @DerekCStewart
@SimonRStones @HDumper @AHSNNetwork meant to post this again, earlier. #WhyWeDoResearch
Retina Int. @RetinaInt
RT @ClinEdge: Are you ready to chat?? Take a moment to say #hello - we will be starting our conversation soon! #WhyWeDoResearch https://t.c…
Hazel A Smith (PhD) @smithhazelann
Ooh, good Q. As each disease & each person's experience of a disease differs. What do you think @sujas15 #WhyWeDoResearch https://t.co/Mlc3B4ejss
ClinEdge @ClinEdge
@smithhazelann ClinEdge is proud to be able to offer these branding and advertising services to sponsors! We know how to work with sponsors, sites, and patients to create the most effective approach for everyone https://t.co/2j7HPP6PvS #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @smithhazelann ClinEdge is proud to be able to offer these branding and advertising services to sponsors! We know how to work…
Lilly Trials @LillyTrials
@ClinEdge Good point! #Healthliteracy is a theme emerging from many of the #whywedoresearch chats so far this week.
BTC Network @BTC_Network
RT @smithhazelann: Ooh, good Q. As each disease & each person's experience of a disease differs. What do you think @sujas15 #WhyWeDoResearc
GuideStar® @AskGuideStar
RT @ClinEdge: @smithhazelann ClinEdge is proud to be able to offer these branding and advertising services to sponsors! We know how to work…
David Montgomery @dmonty007
@smithhazelann A2 "branding" - language/jargon/perceptions - in this context perhaps branding is > about being readily identifiable so how effective is it "with encouraging patient involvement?" #whywedoresearch
BTC Network @BTC_Network
RT @ClinEdge: @smithhazelann ClinEdge is proud to be able to offer these branding and advertising services to sponsors! We know how to work…
ClinEdge @ClinEdge
Did you know? The majority of #RareDiseases are caused by a change or mutation in a person's DNA. Join our #WhyWeDoResearch tweetchat now and chat with us about patient recruitment and rare disease studies! @smithhazelann @DerekCStewart @Irish_RNN @LillyTrials https://t.co/J3xpg1rRnC
GuideStar® @AskGuideStar
RT @LillyTrials: @ClinEdge Good point! #Healthliteracy is a theme emerging from many of the #whywedoresearch chats so far this week.
Hazel A Smith (PhD) @smithhazelann
RT @LillyTrials: @ClinEdge Good point! #Healthliteracy is a theme emerging from many of the #whywedoresearch chats so far this week.
BTC Network @BTC_Network
RT @LillyTrials: @ClinEdge Good point! #Healthliteracy is a theme emerging from many of the #whywedoresearch chats so far this week.
Derek Stewart @DerekCStewart
RT @ClinEdge: Did you know? The majority of #RareDiseases are caused by a change or mutation in a person's DNA. Join our #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Did you know? The majority of #RareDiseases are caused by a change or mutation in a person's DNA. Join our #WhyWeDoResearch
IRNN @Irish_RNN
RT @ClinEdge: Did you know? The majority of #RareDiseases are caused by a change or mutation in a person's DNA. Join our #WhyWeDoResearch
Lina Jódar Fernández @linajodar
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn cuento con vosotros! @Brunedpons @mlanbarr @Moni_Ventoso @C_Sarabia_Cobo
Lynn Laidlaw @lynn_laidlaw
@ClinEdge A1 I have a rare disease, ideally patients should be involved before the research question is even formulated. That’s the only way to ensure that you are researching what is important to patients. #WhyWeDoResearch
R&D Southampton @RDsouthampton
#NHS70 #whywedoresearch https://t.co/WACr8YylBn
Hazel A Smith (PhD) @smithhazelann
RT @lynn_laidlaw: @ClinEdge A1 I have a rare disease, ideally patients should be involved before the research question is even formulated.…
GuideStar® @AskGuideStar
RT @ClinEdge: Did you know? The majority of #RareDiseases are caused by a change or mutation in a person's DNA. Join our #WhyWeDoResearch
Lilly Trials @LillyTrials
@ClinEdge It would be interesting to hear from @massbio, @rarecandace, or @lillystairs on this #whywedoresearch conversation.
BTC Network @BTC_Network
RT @ClinEdge: Did you know? The majority of #RareDiseases are caused by a change or mutation in a person's DNA. Join our #WhyWeDoResearch
BTC Network @BTC_Network
RT @lynn_laidlaw: @ClinEdge A1 I have a rare disease, ideally patients should be involved before the research question is even formulated.…
Hazel A Smith (PhD) @smithhazelann
RT @LillyTrials: @ClinEdge It would be interesting to hear from @massbio, @rarecandace, or @lillystairs on this #whywedoresearch conversati…
ClinEdge @ClinEdge
RT @RDsouthampton: #NHS70 #whywedoresearch https://t.co/WACr8YylBn
HRB CRCI @HRB_CRCI
#ICTD2018 #WhyWeDoResearch https://t.co/y0KABQ1dSS
Blanca Fdz-Lasquetty @bflasquetty
RT @carmenvillarb: #whywedoresearch de 2018 anímate y participa, más información en https://t.co/yGZ0kziM8w @Ana_Gieryc @MarvinHarris76 @C
David Montgomery @dmonty007
A1 "ensure that you are researching what is important to patients" #whywedoresearch https://t.co/hp6SLQFIf3
ClinEdge @ClinEdge
@lynn_laidlaw Thank you for your feedback! We love to hear directly from patients. We completely agree, involving patients from the start is key to success. #whywedoresearch
Candace @RareCandace
A3: Analyzing the social media content created by the patients of a specific rare disease is critical for recruitment plans #whywedoresearch
GuideStar® @AskGuideStar
RT @dmonty007: A1 "ensure that you are researching what is important to patients" #whywedoresearch https://t.co/hp6SLQFIf3
BTC Network @BTC_Network
RT @dmonty007: A1 "ensure that you are researching what is important to patients" #whywedoresearch https://t.co/hp6SLQFIf3
BTC Network @BTC_Network
RT @ClinEdge: @lynn_laidlaw Thank you for your feedback! We love to hear directly from patients. We completely agree, involving patients fr…
Candace @RareCandace
A3: Patients' social media posts, blogs, articles, and videos provide valuable insight into patient life & concerns #whywedoresearch
MESM @MESMGlobal
@ClinEdge A1: Agreed! From a practical point of view, if patients are part of the protocol development process early on, they are less likely to quit at the trial stage. This helps avoid costly delays and expensive re-recruitment. #WhyWeDoResearch https://t.co/zBQTjucOsE
Hazel A Smith (PhD) @smithhazelann
RT @RareCandace: A3: Analyzing the social media content created by the patients of a specific rare disease is critical for recruitment plan…
ClinEdge @ClinEdge
A3: Each patient’s journey will differ. Try to think of different pathways a patient may be taking in order to find your trial think creatively about how to get around those hurdles and communicate with these patients about your study! #WhyWeDoResearch @LillyTrials @Irish_RNN
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @lynn_laidlaw Thank you for your feedback! We love to hear directly from patients. We completely agree, involving patients fr…
GuideStar® @AskGuideStar
RT @MESMGlobal: @ClinEdge A1: Agreed! From a practical point of view, if patients are part of the protocol development process early on, th…
BTC Network @BTC_Network
RT @MESMGlobal: @ClinEdge A1: Agreed! From a practical point of view, if patients are part of the protocol development process early on, th…
IRNN @Irish_RNN
RT @ClinEdge: A3: Each patient’s journey will differ. Try to think of different pathways a patient may be taking in order to find your tria…
Clara Vidal @mcvidalth
RT @carmenvillarb: #Whywedoresearch https://t.co/WSCX340Fdn @maytemoren @DorisGrinspun @maruzafa @serranitopintor @AmaiaOrmij @falicamacho
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: A3: Each patient’s journey will differ. Try to think of different pathways a patient may be taking in order to find your tria…
RBCH Research @RBCH_Research
Listen to our #Cardiologist Dr Chris Critoph talk about the #CardioMEMS monitoring device to help predict heart failure remotely. BBC Breakfast in Dorset Listen from 43:19 min https://t.co/xpmkcmrDQ8 and BBC Solent Listen from 108 min https://t.co/75Zg6HUWfG #whywedoresearch https://t.co/XMjWJs49Gl
Hazel A Smith (PhD) @smithhazelann
RT @MESMGlobal: @ClinEdge A1: Agreed! From a practical point of view, if patients are part of the protocol development process early on, th…
GuideStar® @AskGuideStar
RT @ClinEdge: A3: Each patient’s journey will differ. Try to think of different pathways a patient may be taking in order to find your tria…
BTC Network @BTC_Network
RT @ClinEdge: A3: Each patient’s journey will differ. Try to think of different pathways a patient may be taking in order to find your tria…
GuideStar® @AskGuideStar
RT @RareCandace: A3: Patients' social media posts, blogs, articles, and videos provide valuable insight into patient life & concerns #whywe
BTC Network @BTC_Network
RT @RareCandace: A3: Patients' social media posts, blogs, articles, and videos provide valuable insight into patient life & concerns #whywe
ClinEdge @ClinEdge
RT @lynn_laidlaw: @ClinEdge A1 I have a rare disease, ideally patients should be involved before the research question is even formulated.…
ClinEdge @ClinEdge
@RareCandace Yes, this sort of content is incredibly valuable! Can you recommend any websites you look to for insight or information? #WhyWeDoResearch
ClinEdge @ClinEdge
Question 4 - start with "A4" :) #WhyWeDoResearch https://t.co/SVRA5qYFg3
GuideStar® @AskGuideStar
RT @ClinEdge: Question 4 - start with "A4" :) #WhyWeDoResearch https://t.co/SVRA5qYFg3
ClinEdge @ClinEdge
RT @MESMGlobal: @ClinEdge A1: Agreed! From a practical point of view, if patients are part of the protocol development process early on, th…
BTC Network @BTC_Network
RT @ClinEdge: Question 4 - start with "A4" :) #WhyWeDoResearch https://t.co/SVRA5qYFg3
Dr Gordon Hill @GordonHill1
RT @Irish_RNN: #WhyWeDoResearch tweetchats on 'Patient recruitment for rare diseases study' is happening now! https://t.co/D1YuhtneZE
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @RareCandace Yes, this sort of content is incredibly valuable! Can you recommend any websites you look to for insight or info…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Question 4 - start with "A4" :) #WhyWeDoResearch https://t.co/SVRA5qYFg3
carmen villar @carmenvillarb
Ven al #Whywedoresearch https://t.co/WSCX340Fdn @IgnacioEnriquez @LuisAranton @cuidados @tinagirbes @ManuelSAguilar @Creative_Nurse @jaume_riu @ Maria_EIR16 @ Fenicio_112 @JaviEir_CTO @lore_efyc @ mpf421
Clara Vidal @mcvidalth
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn @IgnacioEnriquez @LuisAranton @cuidados @tinagirbes @ManuelSAguilar @Cre
CCCAHP Southampton @CCCAHP_UoS
RT @RDsouthampton: #NHS70 #WhyWeDoResearch https://t.co/8pwCvJVoTT
CCCAHP Southampton @CCCAHP_UoS
CCCAHPs @benainsworth talks about improving people's lives by making phone apps that really work for real people #NHS70 #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
For all studies think we should be looking at weekend & home visits (where possible). More thinking outside the box! #WhyWeDoResearch https://t.co/kcqDPviCjC
ClinEdge @ClinEdge
@LifeforAlicia @liveararelife #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @smithhazelann: For all studies think we should be looking at weekend & home visits (where possible). More thinking outside the box! #Wh
BTC Network @BTC_Network
RT @smithhazelann: For all studies think we should be looking at weekend & home visits (where possible). More thinking outside the box! #Wh
GGIgreatergift @GGIgreatergift
RT @smithhazelann: 30mins until @ClinEdge & @AskGuideStar & @BTC_Network #WhyWeDoResearch tweetchat on 'Patient Recruitment for Rare Diseas…
Candace @RareCandace
@ClinEdge I recommend Google for blogs, articles and videos. Also doing a hashtag search for the disease on platforms like Facebook, Twitter and Instagram. We use #ITP and #ITPproblems in my community. #WhyWeDoResearch
nobism @nobismhealth
RT @RBCH_Research: Listen to our #Cardiologist Dr Chris Critoph talk about the #CardioMEMS monitoring device to help predict heart failure…
nobism @nobismhealth
RT @ClinEdge: Question 4 - start with "A4" :) #WhyWeDoResearch https://t.co/SVRA5qYFg3
nobism @nobismhealth
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn @IgnacioEnriquez @LuisAranton @cuidados @tinagirbes @ManuelSAguilar @Cre
nobism @nobismhealth
RT @CCCAHP_UoS: CCCAHPs @benainsworth talks about improving people's lives by making phone apps that really work for real people #NHS70 #Wh
Amanda Weaver @amandaweaves
RT @RBCH_Research: This tiny #wireless device inserted between the heart and the lungs measures pressure to help prevent heart failure. Tha…
CMRF Crumlin @CMRF_Crumlin
What does the Children's Clinical Research Unit in Crumlin work on? Learn more about how they're making advancements in children's medicine. #WhyWeDoResearch #ClinicalTrials #TeamResearch #ICTD2018 https://t.co/P68O4zGX3e
Lynn Laidlaw @lynn_laidlaw
@ClinEdge @LillyTrials @Irish_RNN A3 Rare disease charities crucial. Would love to see collaboration between clinicians, if trial not in your centre then there is no reason why you still can’t tell your patients about trials elsewhere and facilitate them taking part. #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
4: Sone centres have nurse-led research clinics for follow up visits. As nurses can usually allocat more time to each appointment satisfaction is often higher for participants #whywedoresearch https://t.co/kcqDPviCjC
CCCAHP Southampton @CCCAHP_UoS
RT @RDsouthampton: #NHS70 #WhyWeDoResearch https://t.co/d6WKBjiTK2
Candace @RareCandace
A4: If the trial location is not in close proximity to the patient, providing travel arrangements is a huge help #whywedoresearch
Javi_Matron @JaviEir_CTO
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn @IgnacioEnriquez @LuisAranton @cuidados @tinagirbes @ManuelSAguilar @Cre
ClinEdge @ClinEdge
getting to studies can be particularly difficult for#raredisease patients. How can we help? Chat with us about it at our #whywedoresearch tweetchat! https://t.co/5xD2dXCdqk
ClinEdge @ClinEdge
@smithhazelann A4 - Yes, that could be the direction studies take in the future! We also hear about virtual studies on the horizon thanks to the capabilities of mobile apps and things like Apple Health #WhyWeDoResearch
Blanca Fdz-Lasquetty @bflasquetty
RT @carmenvillarb: Los que ya lo conocen repiten @salusplay @ValdespinaC @amenesesmonroy @PrescripEnferm @jrsanchezisla @EnferEvidente @Eb
GuideStar® @AskGuideStar
RT @smithhazelann: 4: Sone centres have nurse-led research clinics for follow up visits. As nurses can usually allocat more time to each ap…
BTC Network @BTC_Network
RT @smithhazelann: 4: Sone centres have nurse-led research clinics for follow up visits. As nurses can usually allocat more time to each ap…
Hazel A Smith (PhD) @smithhazelann
RT @RareCandace: @ClinEdge I recommend Google for blogs, articles and videos. Also doing a hashtag search for the disease on platforms like…
GuideStar® @AskGuideStar
RT @ClinEdge: @smithhazelann A4 - Yes, that could be the direction studies take in the future! We also hear about virtual studies on the ho…
ClinEdge @ClinEdge
RT @smithhazelann: For all studies think we should be looking at weekend & home visits (where possible). More thinking outside the box! #Wh
BTC Network @BTC_Network
RT @ClinEdge: @smithhazelann A4 - Yes, that could be the direction studies take in the future! We also hear about virtual studies on the ho…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @smithhazelann A4 - Yes, that could be the direction studies take in the future! We also hear about virtual studies on the ho…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: getting to studies can be particularly difficult for#raredisease patients. How can we help? Chat with us about it at our #w
ClinEdge @ClinEdge
@smithhazelann In the meantime, travel services are extremely critical to helping rare disease patients through the clinical trial process! #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @RareCandace: A4: If the trial location is not in close proximity to the patient, providing travel arrangements is a huge help #whywedor
GuideStar® @AskGuideStar
RT @ClinEdge: @smithhazelann In the meantime, travel services are extremely critical to helping rare disease patients through the clinical…
Candace @RareCandace
A4: I'd also like to see more moral support incorporated into trial design. If the FDA takes issue- we need to address that #whywedoresearch
NIHR CRN Eastern @NIHRCRNEastern
RT @researchPhil: Thanks to all who came to joint talk with @drnatpat on developing research talent to enhance patient experience & outcome…
BTC Network @BTC_Network
RT @ClinEdge: @smithhazelann In the meantime, travel services are extremely critical to helping rare disease patients through the clinical…
Hightower Clinical @HightowerClTrl
@ClinEdge A4: We have partnered with a local non-emergency medical transport company to ensure rides are always available for study visits. Wherever you can decrease the burden on the patient is helpful. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @HightowerClTrl: @ClinEdge A4: We have partnered with a local non-emergency medical transport company to ensure rides are always availab…
BTC Network @BTC_Network
RT @HightowerClTrl: @ClinEdge A4: We have partnered with a local non-emergency medical transport company to ensure rides are always availab…
UrgeInvest @UrgeInvest
RT @mancem: Encantada de participar #whywedoresearch y paso el relevo a @veronicamunyoz @elechover @gelestur @UrgeInvest @laurinchi79 @aiba
ClinEdge @ClinEdge
@smithhazelann That is fantastic Nurses make the world go round - we appreciate you, and we know that you can make a world of difference to clinical trial patients! #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: @smithhazelann That is fantastic Nurses make the world go round - we appreciate you, and we know that you can make a world of…
BTC Network @BTC_Network
RT @ClinEdge: @smithhazelann That is fantastic Nurses make the world go round - we appreciate you, and we know that you can make a world of…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @smithhazelann In the meantime, travel services are extremely critical to helping rare disease patients through the clinical…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @smithhazelann That is fantastic Nurses make the world go round - we appreciate you, and we know that you can make a world of…
Rosa María Hernández💜🎗 @xamacoiba
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn @IgnacioEnriquez @LuisAranton @cuidados @tinagirbes @ManuelSAguilar @Cre
MESM @MESMGlobal
A1: A great way to improve protocol development is by tapping into the e-patient community, whether this be via social media or traditional methods. Here's some info on consulting the e-patients before, during, and after(!) the trial - https://t.co/EvODSmuJz2 #WhyWeDoResearch
ClinEdge @ClinEdge
RT @lynn_laidlaw: @ClinEdge @LillyTrials @Irish_RNN A3 Rare disease charities crucial. Would love to see collaboration between clinicians,…
GuideStar® @AskGuideStar
RT @lynn_laidlaw: @ClinEdge @LillyTrials @Irish_RNN A3 Rare disease charities crucial. Would love to see collaboration between clinicians,…
BTC Network @BTC_Network
RT @lynn_laidlaw: @ClinEdge @LillyTrials @Irish_RNN A3 Rare disease charities crucial. Would love to see collaboration between clinicians,…
Lilly Trials @LillyTrials
@RareCandace A topic that came up during a chat yesterday was about patients who are not on social media—and is there a bias in hearing only from those active on social? #whywedoresearch
GuideStar® @AskGuideStar
RT @MESMGlobal: A1: A great way to improve protocol development is by tapping into the e-patient community, whether this be via social medi…
BTC Network @BTC_Network
RT @MESMGlobal: A1: A great way to improve protocol development is by tapping into the e-patient community, whether this be via social medi…
ClinEdge @ClinEdge
@MESMGlobal Thanks for sharing! #WhyWeDoResearch https://t.co/odFp7SvYAF
ClinEdge @ClinEdge
@RareCandace Definitely! Providing full service travel reduces the burden put on patients to get to site locations. We have also recently began a new initiative called, Patient First Site Activation with the idea of opening sites locations around patients. #whywedoresearch
ClinEdge @ClinEdge
RT @RareCandace: A4: If the trial location is not in close proximity to the patient, providing travel arrangements is a huge help #whywedor
GuideStar® @AskGuideStar
RT @ClinEdge: @RareCandace Definitely! Providing full service travel reduces the burden put on patients to get to site locations. We have a…
BTC Network @BTC_Network
RT @ClinEdge: @RareCandace Definitely! Providing full service travel reduces the burden put on patients to get to site locations. We have a…
Lilly Trials @LillyTrials
A4. Mobile nursing is one way to minimize the patient burden in clinical trials. We've started exploring this approach in several trials: https://t.co/oDjTYtfQrh #whywedoresearch
ClinEdge @ClinEdge
What can we do to help #raredisease patients? Share your thoughts with us now at our #WhyWeDoResearch tweetchat! https://t.co/Yuca6NCoA4
GuideStar® @AskGuideStar
RT @LillyTrials: A4. Mobile nursing is one way to minimize the patient burden in clinical trials. We've started exploring this approach in…
BTC Network @BTC_Network
RT @LillyTrials: A4. Mobile nursing is one way to minimize the patient burden in clinical trials. We've started exploring this approach in…
Lynn Laidlaw @lynn_laidlaw
@MESMGlobal @ClinEdge Patients much more practical than clinicians/ scientists. Lived experience invaluable in highlighting what is acceptable/ achievable when it comes to trial protocols. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: What can we do to help #raredisease patients? Share your thoughts with us now at our #WhyWeDoResearch tweetchat! https://t.c…
BTC Network @BTC_Network
RT @ClinEdge: What can we do to help #raredisease patients? Share your thoughts with us now at our #WhyWeDoResearch tweetchat! https://t.c…
Candace @RareCandace
@LillyTrials Absolutely there is, so perhaps a safe & secure platform for feedback should be created for patient participants so they can have a voice as well. Even if it is just weekly surveys on paper if the patient is not technology savvy. #WhyWeDoResearch
ClinEdge @ClinEdge
What a great conversation! We have two more questions to go... Please respond to question 5 with "A5" #WhyWeDoResearch #kpis https://t.co/FskXvT8dCY
GuideStar® @AskGuideStar
RT @ClinEdge: What a great conversation! We have two more questions to go... Please respond to question 5 with "A5" #WhyWeDoResearch #kpis
BTC Network @BTC_Network
RT @ClinEdge: What a great conversation! We have two more questions to go... Please respond to question 5 with "A5" #WhyWeDoResearch #kpis
Sarah Massie @SFMassie
RT @EEAST_research: sounds like a rotational job share could be beneficial-exposing you to different patient groups and job roles- or have…
Candace @RareCandace
RT @ClinEdge: What can we do to help #raredisease patients? Share your thoughts with us now at our #WhyWeDoResearch tweetchat! https://t.c…
Hazel A Smith (PhD) @smithhazelann
RT @MESMGlobal: A1: A great way to improve protocol development is by tapping into the e-patient community, whether this be via social medi…
Hazel A Smith (PhD) @smithhazelann
RT @LillyTrials: @RareCandace A topic that came up during a chat yesterday was about patients who are not on social media—and is there a bi…
Candace @RareCandace
A5: Besides statistical data, real world evidence is key. Improved quality of life is the best indicator of success. It can be as simple as getting out of bed, or as large as a patient returning to “normal” life. #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @RareCandace Definitely! Providing full service travel reduces the burden put on patients to get to site locations. We have a…
Hazel A Smith (PhD) @smithhazelann
RT @LillyTrials: A4. Mobile nursing is one way to minimize the patient burden in clinical trials. We've started exploring this approach in…
ClinEdge @ClinEdge
A5: Engagement is a huge success indicator for rare disease studies. Screenings and randomizations are always important to finishing the study – but generating awareness within the patient community can be huge from an educational standpoint. #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: What can we do to help #raredisease patients? Share your thoughts with us now at our #WhyWeDoResearch tweetchat! https://t.c…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: What a great conversation! We have two more questions to go... Please respond to question 5 with "A5" #WhyWeDoResearch #kpis
Lynn Laidlaw @lynn_laidlaw
@ClinEdge A5 Surely that depends on the research question? It has to be outcomes that are important to patients as well as researchers. Patients are usually focussed on outcomes that make their life easier on a day to day basis. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: A5: Engagement is a huge success indicator for rare disease studies. Screenings and randomizations are always important to fi…
Tracy Callen @TracyCallen2
@smithhazelann Research in the Community gives you the freedom to go and visit the patients in their own home to delivery research. Win win situation #whywedoresearch
BTC Network @BTC_Network
RT @ClinEdge: A5: Engagement is a huge success indicator for rare disease studies. Screenings and randomizations are always important to fi…
Serafín Fernández @SerafinCuidando
RT @carmenvillarb: Vienes a #Whywedoresearch https://t.co/WSCX340Fdn ? @abogadoenferme @anamarsu @VirgiForero @albertgranero @lafuente_niev
Carlos Nuñez @carlosnunezo
RT @carmenvillarb: Vienes a #Whywedoresearch https://t.co/WSCX340Fdn ? @abogadoenferme @anamarsu @VirgiForero @albertgranero @lafuente_niev
Mac @blue7due
RT @carmenvillarb: Ya tenemos carte gracias a @ferenfer ayudas a difundir? #whywedoresearch , la cita de este año este próximo jueves. Te e…
Helen Rushforth @rushforth78
RT @RBCH_Research: This tiny #wireless device inserted between the heart and the lungs measures pressure to help prevent heart failure. Tha…
IRNN @Irish_RNN
RT @TracyCallen2: @smithhazelann Research in the Community gives you the freedom to go and visit the patients in their own home to delivery…
IRNN @Irish_RNN
RT @ClinEdge: @smithhazelann That is fantastic Nurses make the world go round - we appreciate you, and we know that you can make a world of…
Hazel A Smith (PhD) @smithhazelann
RT @TracyCallen2: @smithhazelann Research in the Community gives you the freedom to go and visit the patients in their own home to delivery…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: A5: Engagement is a huge success indicator for rare disease studies. Screenings and randomizations are always important to fi…
Lilly Trials @LillyTrials
@RareCandace That's an excellent suggestion! #whywedoresearch
Kate @Apelsinklyfta95
RT @RBCH_Research: This tiny #wireless device inserted between the heart and the lungs measures pressure to help prevent heart failure. Tha…
carmen villar @carmenvillarb
#Whywedoresearch 2018 https://t.co/WSCX340Fdn cuento con vosotros! @duequesada @Alicia82mad @Tekuidamos20 @pisano_ana @jalvabu @anajunq_ @ACanteli @jomangon @ManVerPae @ lauraCG4 @victoceron @clickidie @ruymanbrito https://t.co/5YhItRcm1S
jrsanchezisla @jrsanchezisla
RT @carmenvillarb: Los que ya lo conocen repiten @salusplay @ValdespinaC @amenesesmonroy @PrescripEnferm @jrsanchezisla @EnferEvidente @Eb
Candace @RareCandace
A5: I would love to work with companies and the FDA to create a “best practices” guide for maximizing trial design & patient interaction. I think the industry needs to take the lead on it, and quickly. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @RareCandace: A5: Besides statistical data, real world evidence is key. Improved quality of life is the best indicator of success. It ca…
Hagamos Enfermería @HagamosEnferme
RT @carmenvillarb: Ya tenemos carte gracias a @ferenfer ayudas a difundir? #whywedoresearch , la cita de este año este próximo jueves. Te e…
Hazel A Smith (PhD) @smithhazelann
RT @RareCandace: @LillyTrials Absolutely there is, so perhaps a safe & secure platform for feedback should be created for patient participa…
BTC Network @BTC_Network
RT @RareCandace: A5: Besides statistical data, real world evidence is key. Improved quality of life is the best indicator of success. It ca…
Tracy Callen @TracyCallen2
RT @ClinEdge: @smithhazelann That is fantastic Nurses make the world go round - we appreciate you, and we know that you can make a world of…
Health Research Charities Ireland - HRCI @HRCIreland
Dear followers, a bit of advice please. One of our members is wondering if you know of any organisations who provide short-term loans, to support people in undertaking postgraduate studies in the area of health? #whywedoresearch #LoveIrishResearch
Ben Ainsworth @benainsworth
RT @RDsouthampton: #NHS70 #WhyWeDoResearch https://t.co/8pwCvJVoTT
Lynn Laidlaw @lynn_laidlaw
@RareCandace Yes! Patients consistently rate pain and fatigue as important in disease research as they impact so much on our quality of life. #WhyWeDoResearch
fcastia @fcastia
RT @carmenvillarb: Ya tenemos carte gracias a @ferenfer ayudas a difundir? #whywedoresearch , la cita de este año este próximo jueves. Te e…
ClinEdge @ClinEdge
@lynn_laidlaw A5 - Absolutely! This goes back to why it is important to include rare disease patients in the study development process. Before there is even a study on paper, we want to make sure that researchers' goals support the patients' goals! #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: @lynn_laidlaw A5 - Absolutely! This goes back to why it is important to include rare disease patients in the study developmen…
BTC Network @BTC_Network
RT @ClinEdge: @lynn_laidlaw A5 - Absolutely! This goes back to why it is important to include rare disease patients in the study developmen…
Carl Edwards @desktopcarl
RT @DerekCStewart: A bit of calm listening to music before Day 2 of #whywedoresearch begins! https://t.co/lfxep8V9f4
Elena Chover @elechover
RT @mancem: Encantada de participar #whywedoresearch y paso el relevo a @veronicamunyoz @elechover @gelestur @UrgeInvest @laurinchi79 @aiba
ClinEdge @ClinEdge
Did you know? 1 in 10 people in the U.S. are affected by a rare disease. How can #clinicaltrials recruit more #raredisease patients? Let us know at our #whywedoresearch tweetchat or learn more with our whitepaper, The Rare Disease Patient's Experience https://t.co/DAtn3WaTfA https://t.co/FkAIoJG5Gi
ClinEdge @ClinEdge
This is a great idea! As an industry, we have to start somewhere. Thank you for identifying this as a need! @WHO @US_FDA @Irish_RNN @LillyTrials @HightowerClTrl #WhyWeDoResearch https://t.co/E8BmvcjhB1
ClinEdge @ClinEdge
This is our last question! Please start your replies with "A6" #WhyWeDoResearch https://t.co/WMdQ2iBob6
IRNN @Irish_RNN
RT @ClinEdge: This is a great idea! As an industry, we have to start somewhere. Thank you for identifying this as a need! @WHO @US_FDA @Iri
CuidadosLaFe @CuidadosLaFe
RT @DUEdevocacion: ✍️#Enfermeras tomad nota: 🗓️ Jueves 17 ⏰ 20h 📲 #whywedoresearch #TweetChat moderado por @carmenvillarb 🌐 https://t.co/…
Charo Frdez Flórez @charofflo
RT @carmenvillarb: Los que ya lo conocen repiten @salusplay @ValdespinaC @amenesesmonroy @PrescripEnferm @jrsanchezisla @EnferEvidente @Eb
Lynn Laidlaw @lynn_laidlaw
@RareCandace I wonder how much difference there is between the U.K. and USA? We have @NIHRINVOLVE, they are testing out PPI standards at the moment. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: This is our last question! Please start your replies with "A6" #WhyWeDoResearch https://t.co/WMdQ2iBob6
BTC Network @BTC_Network
RT @ClinEdge: This is our last question! Please start your replies with "A6" #WhyWeDoResearch https://t.co/WMdQ2iBob6
GuideStar® @AskGuideStar
RT @ClinEdge: This is a great idea! As an industry, we have to start somewhere. Thank you for identifying this as a need! @WHO @US_FDA @Iri
BTC Network @BTC_Network
RT @ClinEdge: This is a great idea! As an industry, we have to start somewhere. Thank you for identifying this as a need! @WHO @US_FDA @Iri
GuideStar® @AskGuideStar
RT @ClinEdge: Did you know? 1 in 10 people in the U.S. are affected by a rare disease. How can #clinicaltrials recruit more #raredisease
BTC Network @BTC_Network
RT @ClinEdge: Did you know? 1 in 10 people in the U.S. are affected by a rare disease. How can #clinicaltrials recruit more #raredisease
Derek Stewart @DerekCStewart
RT @LillyTrials: A4. Mobile nursing is one way to minimize the patient burden in clinical trials. We've started exploring this approach in…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: This is a great idea! As an industry, we have to start somewhere. Thank you for identifying this as a need! @WHO @US_FDA @Iri
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Did you know? 1 in 10 people in the U.S. are affected by a rare disease. How can #clinicaltrials recruit more #raredisease
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: @lynn_laidlaw A5 - Absolutely! This goes back to why it is important to include rare disease patients in the study developmen…
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: This is our last question! Please start your replies with "A6" #WhyWeDoResearch https://t.co/WMdQ2iBob6
Derek Stewart @DerekCStewart
RT @ClinEdge: Did you know? 1 in 10 people in the U.S. are affected by a rare disease. How can #clinicaltrials recruit more #raredisease
aaron jun @aaronjun_
A1: At @Clara_Health we think of study design as the welcome mat for all patients to your study. While getting patients involved early seems like a big lift and cost, we've seen a more patient-centric design pay huge dividends further down the recruitment funnel! #WhyWeDoResearch https://t.co/681x867dlc
Derek Stewart @DerekCStewart
RT @lynn_laidlaw: @RareCandace I wonder how much difference there is between the U.K. and USA? We have @NIHRINVOLVE, they are testing out…
ClinEdge @ClinEdge
RT @aaronjun_: A1: At @Clara_Health we think of study design as the welcome mat for all patients to your study. While getting patients invo…
Hazel A Smith (PhD) @smithhazelann
RT @lynn_laidlaw: @RareCandace I wonder how much difference there is between the U.K. and USA? We have @NIHRINVOLVE, they are testing out…
aaron jun @aaronjun_
A2 I'm lucky enough to work with @LillyStairs who built our ambassador program @brkthrough_crew from the ground up over the last year and a half. Marketing in the 21st century is 100% about authenticity, and there is NOTHING that can mimic a real patient voice. #WhyWeDoResearch https://t.co/fGrKs1fQzr
Lynn Laidlaw @lynn_laidlaw
@ClinEdge “A6” Is there not an argument for every patient with a rare disease should have access to a specialist in that disease as a basic right? Patients will arguably receive better care, more aware of trial recruitment. #WhyWeDoResearch
NIHR CRN Wessex @NIHRCRNWessex
RT @RBCH_Research: Listen to our #Cardiologist Dr Chris Critoph talk about the #CardioMEMS monitoring device to help predict heart failure…
Candace @RareCandace
A6: Making physicians aware of upcoming CT enrollment is vital. Many doctors are overworked, so simple communication to their offices/health systems is key. Disease specific groups can assist with this as well. #whywedoresearch
GuideStar® @AskGuideStar
RT @aaronjun_: A1: At @Clara_Health we think of study design as the welcome mat for all patients to your study. While getting patients invo…
BTC Network @BTC_Network
RT @aaronjun_: A1: At @Clara_Health we think of study design as the welcome mat for all patients to your study. While getting patients invo…
Kay English Curtin @KayCurtin1
RT @JBBC: As @KayCurtin1 says “If we are going to really value the commitment of the patient voice in research, does a cup of tea and biscu…
Hazel A Smith (PhD) @smithhazelann
#WhyWeDoResearch is this just hospital based doctors? In Ireland & UK our GPs can also refer patients to clinical trials. #WhyWeDoResearch https://t.co/y13FMh7biu
GuideStar® @AskGuideStar
RT @RareCandace: A6: Making physicians aware of upcoming CT enrollment is vital. Many doctors are overworked, so simple communication to th…
BTC Network @BTC_Network
RT @RareCandace: A6: Making physicians aware of upcoming CT enrollment is vital. Many doctors are overworked, so simple communication to th…
aaron jun @aaronjun_
A3 From day one, @Clara_Health made it a focus to help every patient like they were our relatives. It was a ton of work, but thousands of patients later, we realized that the biggest thing that keeps patients from enrolling in a study is...life. #WhyWeDoResearch https://t.co/vVhxDNSpmd
Eva Rosa @EvaRosabla
RT @carmenvillarb: Vienes a #Whywedoresearch https://t.co/WSCX340Fdn ? @abogadoenferme @anamarsu @VirgiForero @albertgranero @lafuente_niev
Candace @RareCandace
This is a great conversation, it reminds me why I became a lawyer. My goal is to work with industry and government officials to navigate how to create these programs. Too often, we don't engage our lawmakers to help facilitate guidelines and regulations #whywedoresearch
María Ramírez Sánchez @lovenursingmery
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn @IgnacioEnriquez @LuisAranton @cuidados @tinagirbes @ManuelSAguilar @Cre
aaron jun @aaronjun_
What I mean by that is that patients all live rich and full lives, as much as they are able. This means jobs, kids, parents, dating...it's a whole constellation of events that happen in their day-to-day. Just like in our own lives. #WhyWeDoResearch
🐞Vento🐞 @Moni_Ventoso
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn cuento con vosotros! @Brunedpons @mlanbarr @Moni_Ventoso @C_Sarabia_Cobo
ClinEdge @ClinEdge
RT @RareCandace: A6: Making physicians aware of upcoming CT enrollment is vital. Many doctors are overworked, so simple communication to th…
Hazel A Smith (PhD) @smithhazelann
RT @RareCandace: A6: Making physicians aware of upcoming CT enrollment is vital. Many doctors are overworked, so simple communication to th…
aaron jun @aaronjun_
So often, I see studies get overly academical. And this leads to the dehumanization of the participant, intentional or not. We forget that these are people with concerns about money and the time it takes to travel somewhere and who will walk their dogs. #WhyWeDoResearch
Candace @RareCandace
A6: And I caution companies to be careful when engaging with patient leaders. I am often the voice in the room who has to remind patients what the federal guidelines are for patient-industry interaction. Great ideas- but not all are legal! #whywedoresearch
Hazel A Smith (PhD) @smithhazelann
RT @RareCandace: This is a great conversation, it reminds me why I became a lawyer. My goal is to work with industry and government officia…
ClinEdge @ClinEdge
A6 - We believe partnering with physicians who are Key Opinion Leaders in the disease and who have close relationships with their patients and can effectively speak with them about clinical research helps significantly. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: A6 - We believe partnering with physicians who are Key Opinion Leaders in the disease and who have close relationships with t…
BTC Network @BTC_Network
RT @ClinEdge: A6 - We believe partnering with physicians who are Key Opinion Leaders in the disease and who have close relationships with t…
aaron jun @aaronjun_
We can't forget that, at the end of the day, a patient journey is actually not THAT unique. Thinking of it as such only furthers their concerns from our own, and decreases our empathy. And without empathy in your study design, you will struggle to recruit ANYONE. #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: A6 - We believe partnering with physicians who are Key Opinion Leaders in the disease and who have close relationships with t…
R&D Southampton @RDsouthampton
#NHS70 #whywedoresearch https://t.co/wOQRVzWfoc
aaron jun @aaronjun_
A4 We focus on helping our clients make their recruitment efforts truly patient-centric. And it's not just a buzzword to us. #WhyWeDoResearch https://t.co/rx0jnHtZP7
ClinEdge @ClinEdge
Thank you all for a great conversation! It is critical that the #clinicaltrial industry serves #raredisease patients to the best of our ability. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @ClinEdge: Thank you all for a great conversation! It is critical that the #clinicaltrial industry serves #raredisease patients to the b…
BTC Network @BTC_Network
RT @ClinEdge: Thank you all for a great conversation! It is critical that the #clinicaltrial industry serves #raredisease patients to the b…
Hightower Clinical @HightowerClTrl
@ClinEdge A6: For rare diseases especially, it's important to establish a strong referral network early on. Registry data can also be helpful as these patients are often more geographically dispersed. #WhyWeDoResearch
aaron jun @aaronjun_
We've helped create landing pages that are much easier to read and more compelling. Embedded HIPAA-compliant pre-screeners into their listings. Worked with their teams to make their listings friendlier by using the language a patient expects. #WhyWeDoResearch
ClinEdge @ClinEdge
Visit https://t.co/2j7HPP6PvS to learn more about ClinEdge's Rare Disease services or to contact one of us and continue this conversation! #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @HightowerClTrl: @ClinEdge A6: For rare diseases especially, it's important to establish a strong referral network early on. Registry d…
BTC Network @BTC_Network
RT @HightowerClTrl: @ClinEdge A6: For rare diseases especially, it's important to establish a strong referral network early on. Registry d…
ClinEdge @ClinEdge
Don't forget to join @BTC_Network and @AskGuideStar tomorrow for a TweetChat on #FinancialManagement! #WhyWeDoResearch
Candace @RareCandace
RT @ClinEdge: Visit https://t.co/2j7HPP6PvS to learn more about ClinEdge's Rare Disease services or to contact one of us and continue this…
GuideStar® @AskGuideStar
RT @ClinEdge: Don't forget to join @BTC_Network and @AskGuideStar tomorrow for a TweetChat on #FinancialManagement! #WhyWeDoResearch
BTC Network @BTC_Network
RT @ClinEdge: Don't forget to join @BTC_Network and @AskGuideStar tomorrow for a TweetChat on #FinancialManagement! #WhyWeDoResearch
ClinEdge @ClinEdge
RT @HightowerClTrl: @ClinEdge A6: For rare diseases especially, it's important to establish a strong referral network early on. Registry d…
aaron jun @aaronjun_
Ultimately, I think the burden to make the patient enrollment process easier falls entirely on our side of the table. Each stakeholder - from us @Clara_Health to a sponsor - holds the responsibility of making enrollment as frictionless as possible. #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Visit https://t.co/2j7HPP6PvS to learn more about ClinEdge's Rare Disease services or to contact one of us and continue this…
nobism @nobismhealth
RT @RDsouthampton: #NHS70 #whywedoresearch https://t.co/wOQRVzWfoc
nobism @nobismhealth
RT @aaronjun_: A4 We focus on helping our clients make their recruitment efforts truly patient-centric. And it's not just a buzzword to us.…
nobism @nobismhealth
RT @ClinEdge: Thank you all for a great conversation! It is critical that the #clinicaltrial industry serves #raredisease patients to the b…
nobism @nobismhealth
RT @aaronjun_: We've helped create landing pages that are much easier to read and more compelling. Embedded HIPAA-compliant pre-screeners i…
nobism @nobismhealth
RT @ClinEdge: Visit https://t.co/2j7HPP6PvS to learn more about ClinEdge's Rare Disease services or to contact one of us and continue this…
nobism @nobismhealth
RT @ClinEdge: Don't forget to join @BTC_Network and @AskGuideStar tomorrow for a TweetChat on #FinancialManagement! #WhyWeDoResearch
nobism @nobismhealth
RT @aaronjun_: Ultimately, I think the burden to make the patient enrollment process easier falls entirely on our side of the table. Each s…
Hazel A Smith (PhD) @smithhazelann
Thank you so much @ClinEdge @AskGuideStar @BTC_Network for a fab #WhyWeDoResearch tweetchat & for everyone for joining in https://t.co/OsH0f8nB31
aaron jun @aaronjun_
The technology is out there. The know-how is, too. And, in the 21st century, all of this stuff is CHEAP! We don't have an excuse for letting our recruitment strategies and the tech we use something that looks lifted straight from a lonely DMV office. #WhyWeDoResearch
GuideStar® @AskGuideStar
RT @smithhazelann: Thank you so much @ClinEdge @AskGuideStar @BTC_Network for a fab #WhyWeDoResearch tweetchat & for everyone for joining i…
Hazel A Smith (PhD) @smithhazelann
Join @GordonHill1, @SRNCN1 & @IACRNUKandIRE at 20:00 (BST) for their #WhyWeDoResearch tweetchat 'Exploring the Relationship between CRN/Ms & their Nursing/Midwifery Colleagues' https://t.co/oV3cA2dfML
Hazel A Smith (PhD) @smithhazelann
Big #WhyWeDoResearch thank you to @LillyTrials & all our American friends who have been joining the lunchtime #WhyWeDoResearch tweetchats when it's early morning for them!
Tona Herráiz @cuidados
RT @carmenvillarb: Ven al #Whywedoresearch https://t.co/WSCX340Fdn @IgnacioEnriquez @LuisAranton @cuidados @tinagirbes @ManuelSAguilar @Cre
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Don't forget to join @BTC_Network and @AskGuideStar tomorrow for a TweetChat on #FinancialManagement! #WhyWeDoResearch
Hazel A Smith (PhD) @smithhazelann
RT @ClinEdge: Thank you all for a great conversation! It is critical that the #clinicaltrial industry serves #raredisease patients to the b…
Tona Herráiz @cuidados
RT @EnferEvidente: El próximo Jueves 17 a las 20h tweetchat #WhyWeDoResearch ¿Como mejorar la colaboración en investigación? https://t.co/4…
aaron jun @aaronjun_
A5 My background is in marketing in the tech sector. People in that world are OBSESSED with data, to a point of detriment. But I think we have the opposite problem here in research. #WhyWeDoResearch https://t.co/gXA29SvDQo
Lilly Trials @LillyTrials
Thanks for all the great insights. Until next time! #whywedoresearch
Tona Herráiz @cuidados
RT @momo68_3: El jueves a las 20h tenemos una cita #WhyWeDoResearch .Gracias @carmenvillarb ! https://t.co/JVZwF08FVV
aaron jun @aaronjun_
I'm surprised on a regular basis at how many folks we work with don't think of their recruitment funnels as a set of metrics to be optimized. #WhyWeDoResearch
aaron jun @aaronjun_
And it's weird, because...we're in RESEARCH! And research is just a bunch of data being scrutinized! But for some reason that level of analysis doesn't get translated to the way we analyze recruitment KPIs. #WhyWeDoResearch
aaron jun @aaronjun_
I'm working on a longer post about this concept, and have a video to go along with it, but basically we look at 25 metrics on a daily basis @Clara_Health while consulting for our clients. #WhyWeDoResearch
motherofaliens @agirlandme
RT @JBBC: As @KayCurtin1 says “If we are going to really value the commitment of the patient voice in research, does a cup of tea and biscu…
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