#WeDocs - Wednesday 16th September 2015 8pm (GMT Standard Time) Research for the next pandemic

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Hosted by WeDocs using #WeDocs

This chat is guest hosted by @dr_nina_g

Our co-hosts include  @kerryhood; @nickafrancis; @GalMicaela;@angewatkins; @stefanrollnick; @nichol_alistair

Background

Flu season is on the horizon again, bringing with it the inevitablepressures on NHS services across the country. Consider those same pressures ina pandemic flu outbreak, and panicky questions arise: how will our healthsystem cope?  Who is most likely to getsick? What is the best way to treat patients? Is there anything to treatpatients with?

We know that pandemic outbreaks of infectious diseases are recurrent andunpredictable events that significantly impact global security and stability [1]. The recent outbreak of Ebola has sparked debate about our global capacityand preparedness to respond effectively to pandemic outbreaks [2, 3]. And Ebola is not as easily transmitted as a respiratory virus such asflu [4].

Our best defense is to be prepared.

But prepared with what? We need to detectcases early, identifying vulnerable groups, develop, test and provide vaccines and medications,and provide evidence-based clinical guidelines and public health advice. To do that we need to conduct research. If we had conducted a trial inthe swine flu pandemic, for example, we would have recruited enough patients toanswer the question about whether Tamiflu works or not in under a week.

PREPARE (Platform for European PreparednessAgainst (Re-)emerging Epidemics) is an EU funded research study designed tohelp us respond rapidly to an infectious disease outbreak. You can read moreabout PREPARE by clicking on this link http://www.prepare-europe.eu/.

We are members of the PREPARE team and are delighted to be hosting this#WeDocs chat.

Our remit is to look specifically at ethical, regulatory, and other challengesto setting up research on infectious disease outbreaks in Europe.  We know for example that a headache for manyinvestigators is the time and effort it takes to get ethical and regulatoryapprovals. We have interviewed and surveyed researchers and clinicians acrossEurope to understand their struggles in setting up studies during previouspandemic flu outbreaks, e.g. Swine flu, SARS.

We are also working with the public to understand their views on takingpart in research.

A key question we have is about the ethics of taking consent before takingpart in a research study when people are ill.

Informed consent is an important safeguard against unethical practice.And yet there is an interesting paradox that clinicians have freedom to decideto use a new treatment with a patient without obtaining consent, but as soon asthat treatment is to be tested in a trial, informed consent must be sought [5]. For example, in the event of an infectious disease outbreak, if wewanted to test two routinely provided medications to see which actually didoffer any treatment gains, we would need to take patients through a lengthy processof giving them written information, time to consider it, ask questions, andthen ask them to sign a detailed consent form. Should researchers be requiredto obtain informed consent during emergency situations such as an infectiousdisease outbreak?

For consent to be valid, patients must understand what is being asked ofthem, understand the risks of taking part and not feel coerced into doing so.Often during acute illness, patients lack that capacity to make such adecision.  In some instances a familymember can consent on their behalf. Family members too can be distressed andstruggle to make that decision. So, is there such a thing as truly informedconsent?

These are some of thechallenging questions we would like to answer. Wehope to hear your thoughts about doing research during a pandemic flu outbreak andhow this might affect you and your clinical practice.

 

We plan to write up thekey ideas from our twitter chat discussion and publish these in a report or ajournal article. By reading this Pre-Chat Information we are assumingthat you are giving us your consent before you take part in this chat. Allquotes will be anonymised.  If you wouldlike to take part in the discussion but not to have your views represented inour write up, we will remove your tweets from the conversation when we write upour findings.

If you are taking partin this chat, we are assuming that you are giving us your consent to use yourviews in our research study. We will be reminding people before the chat startsthat this tweet chat is part of a research study.


These are the some of the questions we’ll beexploring during our tweet-chat: 

·        Have we done enough to take informed consent in this tweetchat?

·        What concerns do you have about us taking informed consent in this way?

·        Should the requirement to obtain patient consent before emergency medicaltreatment be different to obtaining participant consent about emergencyresearch during a pandemic?

·        Is there such a thing as “informed consent” in a crisis?

·        How do we conduct ethically sound research in the heat of a pandemic?

 

Additional reading

UK government planningfor pandemic flu can be found here: www.gov.uk/pandemic-flu

Information about thework of the World Health Organisation in pandemic flu planning can be foundhere: www.who.int/influenza/en/

Guests

-     @kerryhood is Director of Trials, and of the Research Design and ConductService for South East Wales.  Her specific research interests are intrial design, outcome measurement and research inclusion, with a particularfocus on complex trials.

-     @nickafrancis is a Clinical Reader and practicing GP with a specialinterest in infectious disease.

-     @GalMicaela is a microbiologist and reluctant researcher. She isparticularly interested in point of care testing for early detection ofinfectious diseases.

-     @angewatkins has a first class degree in journalism. She has a specialinterest in communication and social media and its role in shaping publicperception in pandemics.

-     @stefanrollnick is a writer and editor at The Secularist Conversation and deputy comment editor for the Bristol Epigram Newspaper. Studying for a BScBiochemistry, Molecular Biology and Biotechnology at the University of Bristol with a specialization in Microbes and Disease.

-     @nichol_alistair is a professor of Critical Care Medicine in Dublin.He leads PREPARE WP1.

-     @dr_nina_gis a researcher and clinician. She is interested in the behaviour andmotivation of people, as individuals and collectively, and in how researchmight influence people to do things differently

 

Prechat by: @dr_nina_g

 

References

1.         World Health Organisation, Pandemic Influenza Preparedness and Response,in A WHO Guidance Document. 2010:Geneva, Switzerland.

2.         Butler, D., How to beat the next Ebola. Nature,2015. 524(7563): p. 22-25.

3.         The, L., Ebola: what lessons for the InternationalHealth Regulations? The Lancet. 384(9951):p. 1321.

4.         World HealthOrganisation. Ebola virus disease.2015; Available from: http://www.who.int/mediacentre/factsheets/fs103/en/ (accessedAugust 2015).

5.         Foëx, B.A., The problem of informed consent in emergencymedicine research. Emergency Medicine Journal, 2001. 18(3): p. 198-204.





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 #WeDocs transcript

 
@kennygibsonnhs
16 September 2015 20:00
@wenurses #wedocs, next pandemic? How do we cope with large numbers of young deaths, inc our own family / colleagues. We need effective OD
@nickafrancis
16 September 2015 20:00
RT @AlysColeKing: TONIGHT #WeDocs chat 8-9 BST Research for the next pandemic w @dr_nina_g @kerryhood @GalMicaela via #@WeDocs http://t.co…
@dr_nina_g
16 September 2015 20:01
Looking forward to chatting this eve about research consent in pandemics. Please remember to use has tag to stay in the chat! #WeDocs
@WeDocs
16 September 2015 20:01
Don't forget to use the #wedocs
@WeDocs
16 September 2015 20:01
Don't forget to chat using the #wedocs @WeDocs
@amcunningham
16 September 2015 20:01
Very proud that my @cardiffuni colleagues are using #wedocs chat on research on pandemics to contribute to their research study :)
@kerryhood
16 September 2015 20:01
@kennygibsonnhs @WeNurses sorry OD? What is that? #wedocs
@StefanRollnick
16 September 2015 20:02
RT @WeDocs: Don't forget to use the #wedocs
@amcunningham
16 September 2015 20:03
Scenario: There is a new pandemic..needs researched.. what does consent to participate in trials look like? http://t.co/WaOVr3oWaT #wedocs
@kennygibsonnhs
16 September 2015 20:03
@julzrasmussen @dr_nina_g @wenurses #wedocs, next pandemic consent, Civil Contingency Act would trump consent, it's we not me, us not I
@WeDocs
16 September 2015 20:04
Hi @dr_nina_g Do you have your first question ready?? #WeDocs
@CRoseveare
16 September 2015 20:04
#WeDocs Chris here - joining from a very rainy southampton: looking forward to an interesting chat
@dr_nina_g
16 September 2015 20:04
@kennygibsonnhs @WeNurses #WeDocs great question - what ideas do you have?
@WeDocs
16 September 2015 20:04
Tonight's chat is about taking informed consent during a pandemic. @WeDocs Please use #Wedocs
@angewatkins
16 September 2015 20:05
Follow the conversation #wedocs https://t.co/UAGLBIg0Ke
@dr_nina_g
16 September 2015 20:05
@amcunningham yes. Lots of lessons we can learn from emergency research. #WeDocs
@dr_nina_g
16 September 2015 20:05
Valid consent = participants comprehend what is being asked, comprehend risks and mustn't feel coerced. Also have time to decide #WeDocs
@dr_nina_g
16 September 2015 20:05
Q1: We are writing this up. Do you consent to us using your views? Have we done enough to take consent here? #WeDocs
@WeDocs
16 September 2015 20:05
Please shout out and say hello if you are joining us on tonites @WeDocs chat #wedocs
@StefanRollnick
16 September 2015 20:05
@amcunningham a responsible media should play a huge part in educating the public more widely, allowing for quicker consesnt #WeDocs
@JulzRasmussen
16 September 2015 20:06
RT @angewatkins: Follow the conversation #wedocs https://t.co/UAGLBIg0Ke
@kennygibsonnhs
16 September 2015 20:06
@kerryhood @wenurses @ dr_nina_g #wedocs next pandemic we need organisation development to support recovery of NHS
@dr_nina_g
16 September 2015 20:06
@CRoseveare welcome Chris! #WeDocs
@angewatkins
16 September 2015 20:06
RT @AlysColeKing: TONIGHT #WeDocs chat 8-9 BST Research for the next pandemic w @dr_nina_g @kerryhood @GalMicaela via #@WeDocs http://t.co…
@JulzRasmussen
16 September 2015 20:06
Please remember to use #wedocs to capture the tweets https://t.co/uJ2x0oJvqb
@amcunningham
16 September 2015 20:06
@WeDocs have we started? #wedocs
@angewatkins
16 September 2015 20:07
RT @amcunningham: Very proud that my @cardiffuni colleagues are using #wedocs chat on research on pandemics to contribute to their research…
@kerryhood
16 September 2015 20:07
@WeDocs hi everyone - I'm a statistician and researcher in infections. #wedocs
@JulzRasmussen
16 September 2015 20:07
Please use #wedocs in all tweets to capture them @WeDocs @dr_nina_g https://t.co/CQgP3xwAt8
@JulzRasmussen
16 September 2015 20:07
RT @kennygibsonnhs: @julzrasmussen @dr_nina_g @wenurses #wedocs, next pandemic consent, Civil Contingency Act would trump consent, it's we …
@StefanRollnick
16 September 2015 20:07
Patients may know best whether they feel like they are making an informed decision. May be important to let them lead discussions #WeDocs
@angewatkins
16 September 2015 20:07
RT @WeDocs: Don't forget to use the #wedocs
@WeDocs
16 September 2015 20:07
RT @JulzRasmussen: Please use #wedocs in all tweets to capture them @WeDocs @dr_nina_g https://t.co/CQgP3xwAt8
@SLTgooders
16 September 2015 20:08
@dr_nina_g It depends... In order to give fully informed consent we would need to know exactly what it will be used for! #wedocs
@WeDocs
16 September 2015 20:08
RT @kerryhood: @WeDocs hi everyone - I'm a statistician and researcher in infections. #wedocs
@StefanRollnick
16 September 2015 20:08
.@WeDocs (late introduction) I'm a student journalist and biochemist with specialisation in microbes and disease! Hello everyone #WeDocs
@dr_nina_g
16 September 2015 20:08
Quick reminder: we'll write up your opinions - have we done enough to take consent here? #WeDocs
@amcunningham
16 September 2015 20:08
RT @dr_nina_g: Quick reminder: we'll write up your opinions - have we done enough to take consent here? #WeDocs
@amcunningham
16 September 2015 20:09
Who all is joining in #wedocs tonight on research ethics? Say hello!
@WeDocs
16 September 2015 20:09
Hello there Stefan. Welcome!!! @WeDocs #Wedocs https://t.co/TSE4Q4kWon
@dr_nina_g
16 September 2015 20:10
Q2: In epi/pandemic - is there such a thing as informed consent? #WeDocs
@OlwenOlwen
16 September 2015 20:10
@SLTgooders @dr_nina_g comprehensive explanation on #wecommunities web page #wedocs
@StefanRollnick
16 September 2015 20:10
RT @amcunningham: Who all is joining in #wedocs tonight on research ethics? Say hello!
@WeDocs
16 September 2015 20:10
@dr_nina_g Nina do you have your first question for us? @WeDocs @kerryhood #wedocs
@kennygibsonnhs
16 September 2015 20:11
@kerryhood @dr_nina_g @julzrasmussen @wenurses #wedocs - we need national oversight to rebut press messages and professional press.
@johndn
16 September 2015 20:11
@amcunningham Hello #WeDocs this evening. I have to leave in 5mins but such an important topic so had to join even for V short while
@dr_nina_g
16 September 2015 20:11
@SLTgooders yes, so differences with different types of research. When ill and in crisis how much info do u take in? #WeDocs
@WeDocs
16 September 2015 20:11
Glad you could join us! We are talking tonight about taking consent during a pandemic #wedocs @WeDocs @dr_nina_g https://t.co/b2QJ2z30Q8
@amcunningham
16 September 2015 20:12
@nickafrancis I think we've met before Nick ;-) remember the hashtag #wedocs
@CRoseveare
16 September 2015 20:12
.@dr_nina_g personally I have no problem with my comments being quoted, but suggest authors should contact people individually #wedocs
@kerryhood
16 September 2015 20:12
@kennygibsonnhs yes, but do we need some national oversight approvals for pandemic research without consent? #WeDocs
@dr_nina_g
16 September 2015 20:12
@johndn @amcunningham Welcome to the chat! We'll circulate discussions too so will keep you in the loop. #WeDocs
@amcunningham
16 September 2015 20:13
#wedocs researching pandemics - thoughts from non-docs are super welcome :) https://t.co/iWtVjHTr8L
@StefanRollnick
16 September 2015 20:13
@kennygibsonnhs we must be careful not to alienate the press however, they could have an important role to play #WeDocs
@dr_nina_g
16 September 2015 20:13
@WeDocs @kerryhood Yes! #WeDocs Questions might be slow coming through? Will RT
@JulzRasmussen
16 September 2015 20:13
@kennygibsonnhs Kenny plz use #wedocs otherwise we can't capture your tweets @dr_nina_g @WeDocs https://t.co/vgUszP5OQN
@JulzRasmussen
16 September 2015 20:13
RT @kerryhood: @kennygibsonnhs yes, but do we need some national oversight approvals for pandemic research without consent? #WeDocs
@VickyLShepherd
16 September 2015 20:13
@dr_nina_g #WeDocs What lessons can be learnt from research during #ebola outbreak?
@JulzRasmussen
16 September 2015 20:14
RT @dr_nina_g: @WeDocs @kerryhood Yes! #WeDocs Questions might be slow coming through? Will RT
@dr_nina_g
16 September 2015 20:14
RT @StefanRollnick: @kennygibsonnhs we must be careful not to alienate the press however, they could have an important role to play #WeDocs
@JulzRasmussen
16 September 2015 20:14
RT @dr_nina_g: @johndn @amcunningham Welcome to the chat! We'll circulate discussions too so will keep you in the loop. #WeDocs
@nichol_alistair
16 September 2015 20:14
@amcunningham #wedocs Hi This is Alistair. I am a doctor in Dublin who worked during the 2009 pandemic with the critically ill.
@Dengie_GP
16 September 2015 20:14
@dr_nina_g #WeDocs Is the question you seek to answer re: proportionate burden of consent to the situation? E.g. consent to capture tweets?
@kerryhood
16 September 2015 20:14
@StefanRollnick @kennygibsonnhs we need to be singing from the same hymn sheet, but we should not become unquestionable? #WeDocs
@JulzRasmussen
16 September 2015 20:15
RT @Dengie_GP: @dr_nina_g #WeDocs Is the question you seek to answer re: proportionate burden of consent to the situation? E.g. consent to …
@dr_nina_g
16 September 2015 20:15
@Dengie_GP yes. Capture tweets to capture views. Focus groups don't tell the full story #WeDocs
@dr_nina_g
16 September 2015 20:16
RT @nichol_alistair: @amcunningham #wedocs Hi This is Alistair. I am a doctor in Dublin who worked during the 2009 pandemic with the criti…
@nickafrancis
16 September 2015 20:16
#wedocs So important to be able to do research in pandemics. We learn't little from last flu pandemic!
@JulzRasmussen
16 September 2015 20:16
Welcome @nichol_alistair! #wedocs @WeDocs https://t.co/NR8D39ELtj
@JulzRasmussen
16 September 2015 20:16
RT @VickyLShepherd: @dr_nina_g #WeDocs What lessons can be learnt from research during #ebola outbreak?
@dr_nina_g
16 September 2015 20:17
@VickyLShepherd Excellent question - many things. Including political will needed. MSF @JoanneLiu_MSF talks about this as key #WeDocs
@WeDocs
16 September 2015 20:17
RT @nickafrancis: #wedocs So important to be able to do research in pandemics. We learn't little from last flu pandemic!
@nickafrancis
16 September 2015 20:17
#wedocs Hard enough to take consent for research not in a pandemic. How the heck do we do it in the craziness of a pandemic?
@dr_nina_g
16 September 2015 20:17
Q2: Is there such a thing as “informed consent” in a crisis? #WeDocs
@WeDocs
16 September 2015 20:17
RT @JulzRasmussen: Welcome @nichol_alistair! #wedocs @WeDocs https://t.co/NR8D39ELtj
@StefanRollnick
16 September 2015 20:17
@kerryhood @kennygibsonnhs agree! Appearing unquestionable leads to public cynicism. Working alongside journalists could help this #WeDocs
@kerryhood
16 September 2015 20:18
@nickafrancis so what stopped us learning? How did it relate to consent issues. #WeDocs
@amcunningham
16 September 2015 20:18
@dr_nina_g have you got a set of qns you are going to ask Nina? or is discussion more freeform? #wedocs
@dr_nina_g
16 September 2015 20:18
Valid consent = participants comprehend what is being asked, comprehend risks and mustn't feel coerced. Also have time to decide #WeDocs
@SLTgooders
16 September 2015 20:18
@dr_nina_g Probably not very much! May be able to give informed consent about some routine/common things but not others #wedocs
@kerryhood
16 September 2015 20:18
RT @nickafrancis: #wedocs Hard enough to take consent for research not in a pandemic. How the heck do we do it in the craziness of a pandem…
@OlwenOlwen
16 September 2015 20:18
@WeDocs @dr_nina_g co sent given #wedocs
@amcunningham
16 September 2015 20:18
What kind of things might patients have to give consent for in a pandemic? testing? treatments? immunisations? #wedocs
@DrChrisWilliams
16 September 2015 20:18
Research ethics. How will we prepare for the next pandemic? @WeDocs discussion tonight is about consent in unpredictable situations. #wedocs
@WeDocs
16 September 2015 20:19
Welcome @CRteneiro. Glad u cld join us for tonites @WeDocs chat #wedocs https://t.co/vwLwcXjsnF
@dr_nina_g
16 September 2015 20:19
@amcunningham Yes - are questions not coming through? current one: is informed consent in a crisis valid? #WeDocs
@nickafrancis
16 September 2015 20:19
@kerryhood #wedocs It just takes too long to get permissions in place.
@VickyLShepherd
16 September 2015 20:20
@dr_nina_g #WeDocs Risk benefit analysis vital. Research risk vs existing treatment = minimal then no/deferred consent model may be ethical
@amcunningham
16 September 2015 20:20
@dr_nina_g are the qns coming from you or @wedocs? I couldn't see one. also think that qn needs more explanation #wedocs
@kerryhood
16 September 2015 20:20
@nickafrancis so is it the consent or the permissions which is the issue? #wedocs
@dr_nina_g
16 September 2015 20:20
Informed consent in crisis is common problem for emergency research #WeDocs http://t.co/vdm1wiIQR5
@dr_nina_g
16 September 2015 20:20
RT @nickafrancis: @kerryhood #wedocs It just takes too long to get permissions in place.
@ChrisMulryan
16 September 2015 20:20
Informed consent seems a high standard, even valid consent in a situation when @ #wedocs may not even know all info, just make me better
@amcunningham
16 September 2015 20:20
@dr_nina_g why would a crisis in itself make consent less valid? do you mean that unlikely enough time to do properly? #wedocs
@StefanRollnick
16 September 2015 20:21
@nickafrancis @kerryhood could an improved public understanding of science help to speed the process up? #WeDocs
@nickafrancis
16 September 2015 20:21
RT @dr_nina_g: Q2: Is there such a thing as “informed consent” in a crisis? #WeDocs
@zplatif
16 September 2015 20:21
RT @amcunningham: #wedocs researching pandemics - thoughts from non-docs are super welcome :) https://t.co/iWtVjHTr8L
@kerryhood
16 September 2015 20:21
People don't get long to consent in any acute infection studies. Is the issue more about the time for professionals? #WeDocs
@OlwenOlwen
16 September 2015 20:21
@amcunningham @WeDocs Remember AIDS pandemic 80's no contest for test HTVL3 -awful consequence. Of breaking bad news #WeDocs
@dr_nina_g
16 September 2015 20:21
@VickyLShepherd yes. Deferred consent may be better especially when a surrogate consenter not available #WeDocs
@WeDocs
16 September 2015 20:21
Drs don't need to take consent during emergencies. Should researchers?? @nickfrancis @kerryhood @dr_nina_g#wedocs https://t.co/8QbkcOKpCw
@johndn
16 September 2015 20:21
@UKPharmacist @NPA1921 @PSNCNews there's a @WeDocs discussion live on consent in pandemics now-I have to go but any interest to you? #wedocs
@WeDocs
16 September 2015 20:21
RT @kerryhood: @nickafrancis so what stopped us learning? How did it relate to consent issues. #WeDocs
@nickafrancis
16 September 2015 20:22
@amcunningham #wedocs It is consent for research that we are interested in here.
@WeDocs
16 September 2015 20:22
RT @VickyLShepherd: @dr_nina_g #WeDocs Risk benefit analysis vital. Research risk vs existing treatment = minimal then no/deferred consent …
@drol007
16 September 2015 20:22
@kerryhood @amcunningham @dr_nina_g have to say it's a little unclear - curious to know the game plan #wedocs
@dr_nina_g
16 September 2015 20:22
@amcunningham yes. Do people have time to absorb and comprehend what is being asked and risks #WeDocs
@SLTgooders
16 September 2015 20:22
@dr_nina_g Also have the right to withdraw consent/change their mind #WeDocs
@kerryhood
16 September 2015 20:22
@StefanRollnick @nickafrancis yes - I think a greater level of awareness and understanding of what research is would help. #wedocs
@adriangkedwards
16 September 2015 20:22
Q seems about consent, but also are Res Ethics different in pandemic - urgency and importance? Ebola res seemed rightly different #WeDocs
@dr_nina_g
16 September 2015 20:22
@amcunningham also do people feel coerced by the idea that treatment offered in research is "best treatment"? #WeDocs
@WeDocs
16 September 2015 20:23
Questions are coming from @dr_nina_g. Nina plz also use @wedocs #wedocs https://t.co/sGjda6Kqja
@kerryhood
16 September 2015 20:23
@StefanRollnick @nickafrancis the Q is how do we achieve that? #wedocs
@WeDocs
16 September 2015 20:23
RT @kerryhood: People don't get long to consent in any acute infection studies. Is the issue more about the time for professionals? #WeDocs
@nickafrancis
16 September 2015 20:23
@StefanRollnick @kerryhood #wedocs Yes, I think improved public understanding is important in getting committees to ease up.
@ChrisMulryan
16 September 2015 20:24
@OlwenOlwen @amcunningham @WeDocs do you think was this linked to poor treatment options @ the time, is reversibility a factor #wedocs
@VickyLShepherd
16 September 2015 20:24
@dr_nina_g #WeDocs Yes-if personal rep not poss then prof rep sought –likely to be treating Dr anyway, but time lost in process.Ask Dr 1st?
@JulzRasmussen
16 September 2015 20:24
RT @dr_nina_g: @amcunningham also do people feel coerced by the idea that treatment offered in research is "best treatment"? #WeDocs
@StefanRollnick
16 September 2015 20:24
@kerryhood @nickafrancis more public outreach from universities is definitely key! public science events, work in schools, etc #WeDocs
@dr_nina_g
16 September 2015 20:24
@drol007 @kerryhood @amcunningham in crisis eli/pandemic research hard to do - need to treat. need research to inform treatment #WeDocs
@JulzRasmussen
16 September 2015 20:25
Tonight's @WeDocs chat talking about taking informed consent during pandemics. #wedocs https://t.co/Lr6Tw3NV2F
@nichol_alistair
16 September 2015 20:25
@VickyLShepherd @dr_nina_g #WeDocs in 2009 we could have answered whether tamiflu worked in 1 day if we studied the people who got it!
@dr_nina_g
16 September 2015 20:25
RT @VickyLShepherd: @dr_nina_g #WeDocs Yes-if personal rep not poss then prof rep sought –likely to be treating Dr anyway, but time lost i…
@dr_nina_g
16 September 2015 20:26
RT @SLTgooders: @dr_nina_g Also have the right to withdraw consent/change their mind #WeDocs
@dr_nina_g
16 September 2015 20:26
RT @kerryhood: People don't get long to consent in any acute infection studies. Is the issue more about the time for professionals? #WeDocs
@dr_nina_g
16 September 2015 20:26
RT @ChrisMulryan: Informed consent seems a high standard, even valid consent in a situation when @ #wedocs may not even know all info, just…
@nickafrancis
16 September 2015 20:27
#wedocs Do you think it is ok to use patient samples for research without consent in pandemics?
@kerryhood
16 September 2015 20:27
I do think we should be able to have simpler processes where we are treating people with licensed by not evidence based meds #WeDocs
@dr_nina_g
16 September 2015 20:27
Q3: Should taking patient consent b4 emergency med treatment be different to that for emergency research in a pandemic? #WeDocs
@dr_nina_g
16 September 2015 20:27
RT @nichol_alistair: @VickyLShepherd @dr_nina_g #WeDocs in 2009 we could have answered whether tamiflu worked in 1 day if we studied the p…
@kerryhood
16 September 2015 20:28
This is a bit different to experimental early phase studies (although they may need to occur too!) #WeDocs
@dr_nina_g
16 September 2015 20:28
RT @nickafrancis: #wedocs Do you think it is ok to use patient samples for research without consent in pandemics?
@JulzRasmussen
16 September 2015 20:28
Can we take valid consent during an emergency?? Important question for tonight's @wedocs chat #wedocs @dr_nina_g https://t.co/xZCMGi4muQ
@JulzRasmussen
16 September 2015 20:28
RT @dr_nina_g: Q2: Is there such a thing as “informed consent” in a crisis? #WeDocs
@drol007
16 September 2015 20:29
Are there accepted models e.g. post Ebola that can be used - is the intention to treat whatever in a crisis #wedocs https://t.co/Q9pv6KrgXW
@JulzRasmussen
16 September 2015 20:29
Third questions for tonight's @WeDocs chat #wedocs @dr_nina_g https://t.co/14NlW3cfFq
@dr_nina_g
16 September 2015 20:29
@kerryhood yes, lots of variability in clinical practice already #WeDocs
@kerryhood
16 September 2015 20:30
@dr_nina_g I think it may depend on how 'different' the experiment is to usual treatment. What do others think? #wedocs
@JulzRasmussen
16 September 2015 20:30
RT @drol007: Are there accepted models e.g. post Ebola that can be used - is the intention to treat whatever in a crisis #wedocs https://t…
@WeDocs
16 September 2015 20:30
RT @kerryhood: @dr_nina_g I think it may depend on how 'different' the experiment is to usual treatment. What do others think? #wedocs
@WeDocs
16 September 2015 20:31
RT @JulzRasmussen: Third questions for tonight's @WeDocs chat #wedocs @dr_nina_g https://t.co/14NlW3cfFq
@WeDocs
16 September 2015 20:31
RT @JulzRasmussen: Can we take valid consent during an emergency?? Important question for tonight's @wedocs chat #wedocs @dr_nina_g https:…
@VickyLShepherd
16 September 2015 20:31
@dr_nina_g @kerryhood #WeDocs Yes- If existing treatment not EBM, then ethically questionable to delay potentially effective new treatment
@nickafrancis
16 September 2015 20:31
@JulzRasmussen @WeDocs @dr_nina_g #wedocs Maybe it is best to get the study approved by members of the public and not get individual consent
@dr_nina_g
16 September 2015 20:31
RT @VickyLShepherd: @dr_nina_g @kerryhood #WeDocs Yes- If existing treatment not EBM, then ethically questionable to delay potentially effe…
@dr_nina_g
16 September 2015 20:32
@drol007 accepted models in emergency care. But all with ethical trade-offs #WeDocs
@DrChrisWilliams
16 September 2015 20:32
In emergency situations the consent model can operate differently. In #pandemic the wider population depends on stopping the spread. #wedocs
@drol007
16 September 2015 20:32
Agreed or if it's potentially life saving or no standard treatment available or little or no evidence #wedocs https://t.co/WPzRRrZADV
@kerryhood
16 September 2015 20:32
@VickyLShepherd @dr_nina_g that so important to remember for public awareness - not all current treatments are EBM @StefanRollnick #wedocs
@dr_nina_g
16 September 2015 20:33
@drol007 e.g. can use a surrogate decision maker to decide on patient's behalf but SDM should decide based on pts values #WeDocs
@nichol_alistair
16 September 2015 20:33
@kerryhood @dr_nina_g #wedocs Agree. If only data and treatment similar to 'usual' practice. Ok by me.
@nickafrancis
16 September 2015 20:33
@kerryhood @dr_nina_g #wedocs But if low risk, may be ok even if 'different'.
@Damian_Roland
16 September 2015 20:33
#wedocs where deferred consent comes into its own...? @eclipsestudy http://t.co/XS0WiAXYFE @JulzRasmussen @wedocs @dr_nina_g @kerryhood
@WeDocs
16 September 2015 20:33
Good point. Could we do this? Any examples of this? @WeDocs #wedocs @dr_nina_g https://t.co/fcwAwaJPwt
@kerryhood
16 September 2015 20:33
RT @nickafrancis: @JulzRasmussen @WeDocs @dr_nina_g #wedocs Maybe it is best to get the study approved by members of the public and not get…
@dr_nina_g
16 September 2015 20:33
@drol007 In public focus groups many said the don't talk with family about whether they would want to participate in research #WeDocs
@StefanRollnick
16 September 2015 20:34
@kerryhood @VickyLShepherd @dr_nina_g EBM = evidence based medicine? In danger of getting lost in jargon here... #WeDocs
@ChrisMulryan
16 September 2015 20:34
@dr_nina_g I think this is a pathogenicity specific question, what is the organism capable of, proportionate response #wedocs
@jodyaberdein
16 September 2015 20:34
@JulzRasmussen @WeDocs @dr_nina_g Ask a cardiologist or a neurologist about to primary PCI an MI or 'Lyse a stroke... #wedocs
@dr_nina_g
16 September 2015 20:34
@WeDocs yes - in US in particular lots of waived consent studies. Less so here. #WeDocs
@kerryhood
16 September 2015 20:35
@StefanRollnick sorry - hazard with only 140 chars! Yes evidence based medicine. #WeDocs
@WeDocs
16 September 2015 20:35
RT @dr_nina_g: @WeDocs yes - in US in particular lots of waived consent studies. Less so here. #WeDocs
@dr_nina_g
16 September 2015 20:35
@WeDocs Needs enough public consultation - but how much is enough? In an epi/pandemic would the public care? #WeDocs
@now_its_nora
16 September 2015 20:36
RT @dr_nina_g: @WeDocs yes - in US in particular lots of waived consent studies. Less so here. #WeDocs
@kerryhood
16 September 2015 20:36
@dr_nina_g @WeDocs can we specify conditions for acceptability when there is no pandemic? #wedocs
@dr_nina_g
16 September 2015 20:36
Tricky topic to discuss with 140 char! But great to hear some views wouldn't get otherwise via F groups #WeDocs
@StefanRollnick
16 September 2015 20:37
@ChrisMulryan @dr_nina_g very interesting point, would this be difficult to make specific policy for? #WeDocs
@dr_nina_g
16 September 2015 20:37
@DrChrisWilliams tell us more? #WeDocs
@dr_nina_g
16 September 2015 20:38
@nichol_alistair @VickyLShepherd What were difficulties there in getting studies up and running? #WeDocs
@WeDocs
16 September 2015 20:39
RT @StefanRollnick: @ChrisMulryan @dr_nina_g very interesting point, would this be difficult to make specific policy for? #WeDocs
@nickafrancis
16 September 2015 20:39
@jodyaberdein @JulzRasmussen @WeDocs @dr_nina_g #wedocs Do you mean they do it without consent?
@kerryhood
16 September 2015 20:40
I do think there is a real challenge for staff in a pandemic situation to spent time explains research rather than just treatment #WeDocs
@nickafrancis
16 September 2015 20:40
@adriangkedwards #wedocs Getting public support seems important to change this.
@kerryhood
16 September 2015 20:41
We could consider whether or not randomised consent designs would work (so you consent people to receive allocated treatment) #WeDocs
@StefanRollnick
16 September 2015 20:41
@WeDocs It's been a blast, but I'm off to a pub-editorial meeting with the student paper. Definitely learnt a lot from this chat #WeDocs
@dr_nina_g
16 September 2015 20:41
Final question: Would clinicians be able take research consent during a pandemic? #WeDocs
@jodyaberdein
16 September 2015 20:41
@nickafrancis @JulzRasmussen @WeDocs @dr_nina_g Definitely not, they take it. Well and fast. #wedocs
@nickafrancis
16 September 2015 20:41
@kerryhood #wedocs unbelievably challenging. Especially if colleagues off sick ...
@drol007
16 September 2015 20:42
Disappointing but not surprising - it's not embedded in all clinical practice #wedocs #itsoktoask @OfficialNIHR https://t.co/wpryexJobq
@dr_nina_g
16 September 2015 20:42
@kerryhood tell us more? #WeDocs
@adriangkedwards
16 September 2015 20:42
@kerryhood any scope for Consent Guardians (like Data Protection same)? #WeDocs
@dr_nina_g
16 September 2015 20:43
RT @nickafrancis: @kerryhood #wedocs unbelievably challenging. Especially if colleagues off sick ...
@nickafrancis
16 September 2015 20:43
@jodyaberdein @JulzRasmussen @WeDocs @dr_nina_g #wedocs What is key to doing it well and fast?
@dr_nina_g
16 September 2015 20:44
@nickafrancis @adriangkedwards yes - in focus groups members of public said they would want anything, esp if thought it would work #WeDocs
@VickyLShepherd
16 September 2015 20:44
@dr_nina_g @nichol_alistair #WeDocs Don't know, but impact of time for obtaining approvals DURING pandemic likely to result in delays?
@dr_nina_g
16 September 2015 20:44
RT @adriangkedwards: @kerryhood any scope for Consent Guardians (like Data Protection same)? #WeDocs
@CRoseveare
16 September 2015 20:44
.@dr_nina_g #wedocs this will be tough when frontline pressures are extreme: research teams will need to provide lots of support
@dr_nina_g
16 September 2015 20:44
@adriangkedwards @kerryhood tell us more? #WeDocs
@kerryhood
16 September 2015 20:45
@dr_nina_g Zelen proposed a design where you randomise before consent and then just consent for treatment allocated. Simpler #wedocs
@dr_nina_g
16 September 2015 20:45
@VickyLShepherd @nichol_alistair yes. Big prob with getting studies set up. Sleeping protocols in place now in some countries #WeDocs
@dr_nina_g
16 September 2015 20:46
@CRoseveare once epi/pandemic spreads -is too late. Need studies set up in "peacetime" with staff trained and ready, no?#WeDocs
@nickafrancis
16 September 2015 20:47
#wedocs But would ethics accept that? https://t.co/tX7bZTauYr
@kerryhood
16 September 2015 20:47
The challenge with sleeping protocols is you have to know what the main Q's are in advance #WeDocs
@adriangkedwards
16 September 2015 20:47
@dr_nina_g independent non-health/academic, appointed to exercise Guardianship for important urgent res in population interest? #WeDocs
@drol007
16 September 2015 20:47
.@kerryhood @dr_nina_g would that depend on the risks of treatment if "experimental" or early phase #WeDocs
@WeDocs
16 September 2015 20:47
Are there any particular points that are coming out of tonight's chat @dr_nina_g that you haven't heard before during interviews? #wedocs
@jodyaberdein
16 September 2015 20:47
@nickafrancis #wedocs potentially not. I see that as potentially unethical in itself :)
@OlwenOlwen
16 September 2015 20:48
@dr_nina_g @CRoseveare that sees sensible #wedocs
@dr_nina_g
16 September 2015 20:48
@VickyLShepherd @nichol_alistair in Canada ethics committees approved sleeping protocol on christmas day - some commitment! #WeDocs
@VickyLShepherd
16 September 2015 20:48
@adriangkedwards @kerryhood #WeDocs Proxy decision makers found no better than chance in studies with patient-proxy pairs&theoretical trials
@kerryhood
16 September 2015 20:48
Maybe we need to have a single central group which approves both ethics and governance for the UK... #WeDocs
@drol007
16 September 2015 20:48
I would say that applies to all research sadly #wedocs https://t.co/qDHucMWkyZ
@kerryhood
16 September 2015 20:48
...with pre-existing 'domains' of acceptability with community consultation #WeDocs
@dr_nina_g
16 September 2015 20:48
@jodyaberdein @nickafrancis tell us more? #WeDocs
@dr_nina_g
16 September 2015 20:49
RT @drol007: I would say that applies to all research sadly #wedocs https://t.co/qDHucMWkyZ
@OlwenOlwen
16 September 2015 20:49
RT @kerryhood: Maybe we need to have a single central group which approves both ethics and governance for the UK... #WeDocs
@dr_nina_g
16 September 2015 20:49
RT @VickyLShepherd: @adriangkedwards @kerryhood #WeDocs Proxy decision makers found no better than chance in studies with patient-proxy pai…
@dr_nina_g
16 September 2015 20:49
RT @kerryhood: ...with pre-existing 'domains' of acceptability with community consultation #WeDocs
@kerryhood
16 September 2015 20:50
@drol007 @CRoseveare @dr_nina_g which may mean that these studies take priority over others - tough! #WeDocs
@dr_nina_g
16 September 2015 20:50
@WeDocs yes - need to hear more from clinicians and what the realists are for them. #WeDocs
@jodyaberdein
16 September 2015 20:51
@dr_nina_g @nickafrancis #wedocs If 'stringent' ethics make emergency studies impossible we'll miss treatments and harms: unethical
@dr_nina_g
16 September 2015 20:51
@WeDocs most of what we know is from public who are a bit bewildered at the idea and v influenced by media. #WeDocs
@jodyaberdein
16 September 2015 20:51
@dr_nina_g @nickafrancis #wedocs especially in a framework where much of what we do in emergencies has poor evidence base, yet is done...
@dr_nina_g
16 September 2015 20:52
@jodyaberdein @nickafrancis really tough research to do and so necessary #WeDocs
@kerryhood
16 September 2015 20:52
@KirstyChallen @marcaevans @WeDocs indeed we need to balance the need for consent with the need for evidence based care #WeDocs
@WeDocs
16 September 2015 20:52
RT @dr_nina_g: @WeDocs yes - need to hear more from clinicians and what the realists are for them. #WeDocs
@WeDocs
16 September 2015 20:52
RT @dr_nina_g: @WeDocs most of what we know is from public who are a bit bewildered at the idea and v influenced by media. #WeDocs
@dr_nina_g
16 September 2015 20:52
@WeDocs * realities not realists! - spellcheck #WeDocs
@dr_nina_g
16 September 2015 20:53
RT @jodyaberdein: @dr_nina_g @nickafrancis #wedocs especially in a framework where much of what we do in emergencies has poor evidence base…
@drol007
16 September 2015 20:53
.@kerryhood @CRoseveare @dr_nina_g so should it form part of a major incident protocol rather than research per se #wedocs
@AnnMTaylor61
16 September 2015 20:53
RT @kerryhood: Maybe we need to have a single central group which approves both ethics and governance for the UK... #WeDocs
@adriangkedwards
16 September 2015 20:54
@kerryhood more what I had in mind #WeDocs
@kerryhood
16 September 2015 20:54
@drol007 @CRoseveare @dr_nina_g that's an interesting idea. That really makes research part of practice. #WeDocs
@dr_nina_g
16 September 2015 20:54
RT @drol007: .@kerryhood @CRoseveare @dr_nina_g so should it form part of a major incident protocol rather than research per se #wedocs
@GalMicaela
16 September 2015 20:54
@ChrisMulryan @dr_nina_g but have to be prepared to respond rapidly.again pre approved protocols covering eventualities #wedocs
@WeDocs
16 September 2015 20:55
What are the realities for drs regarding taking consent during emergency situations? @wedocs #wedocs https://t.co/fDNb3mY1V3
@dr_nina_g
16 September 2015 20:55
RT @kerryhood: @drol007 @CRoseveare @dr_nina_g that's an interesting idea. That really makes research part of practice. #WeDocs
@amcunningham
16 September 2015 20:56
@nickafrancis yes I knew that ... but I was wondering what nature of research might be #wedocs
@kerryhood
16 September 2015 20:56
@marcaevans @KirstyChallen @WeDocs although all of the regulations allow for situations when people do not have capacity. #WeDocs
@amcunningham
16 September 2015 20:56
@kerryhood what is a sleeping protocol? #wedocs
@nickafrancis
16 September 2015 20:56
@jodyaberdein #wedocs I agree! Is it ethical for research committees to block research that may benefit many!
@dr_nina_g
16 September 2015 20:57
@WeDocs Is there time? And ethically is there time not to take informed consent? #WeDocs
@GalMicaela
16 September 2015 20:57
@marcaevans @kerryhood @KirstyChallen @WeDocs deferred consent acceptable? And when? #WeDocs
@jodyaberdein
16 September 2015 20:57
@WeDocs #wedocs Fear, anxiety and pain demolish rational thought. Big question over validity perhaps?
@WeDocs
16 September 2015 20:57
And they also allow for medical emergencies @wedocs #wedocs @kerryhood https://t.co/dq4V9MH5HH
@kerryhood
16 September 2015 20:58
@amcunningham it is a study fully approved, but without a timeframe to be initiated when a pandemic occurs. #wedocs
@GalMicaela
16 September 2015 20:58
@amcunningham @kerryhood pre approved protocol #WeDocs
@WeDocs
16 September 2015 20:58
RT @GalMicaela: @marcaevans @kerryhood @KirstyChallen @WeDocs deferred consent acceptable? And when? #WeDocs
@amcunningham
16 September 2015 20:58
@kerryhood sorry if was explained earlier- oops #wedocs
@dr_nina_g
16 September 2015 20:58
@amcunningham @nickafrancis big range. Need early case detection, vaccine development, drugs, public health advice etc #WeDocs
@dr_nina_g
16 September 2015 20:59
RT @jodyaberdein: @WeDocs #wedocs Fear, anxiety and pain demolish rational thought. Big question over validity perhaps?
@nickafrancis
16 September 2015 20:59
@amcunningham #wedocs Everything from basic epidemiology to trials of new interventions.
@amcunningham
16 September 2015 20:59
@kerryhood missed out on about 20 mins there... were you hoping to get perspectives of docs or public tonight... or both? #wedocs
@dr_nina_g
16 September 2015 20:59
RT @nickafrancis: @jodyaberdein #wedocs I agree! Is it ethical for research committees to block research that may benefit many!
@DrChrisWilliams
16 September 2015 20:59
Most health systems set up to treat unwell individuals. Different approach needed in a #pandemic. @dr_nina_g @kerryhood @EpprWatch #wedocs




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