@DECISION_Study

Follow-on study refining a decision aid for family members making decisions about research on behalf of someone lacking capacity to consent (PI @VickyLShepherd)

 Cardiff, Wales
cardiff.ac.uk/centre-for-trials-research/research/studies-and-trials/view/decision-2
Joined November 2017
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  • Following166
  • Followers135
24Media
Join Dementia Research @beatdementia is a hugely important resource to link researchers & people wanting to help research. Its been invaluable for @DECISION_Study recruitment, & participants have enjoyed taking part from the comfort & safety of their homes. Please sign up!
Adam Smith@BetterResearch2 Dec 2020
In Nov 2019, 155 people living with #Dementia registered on Join Dementia Research, in November 2020 it was 50 people! More people without dementia are registering, but even that is around 1/2 as many as 2019. To sustain recruitment to studies, we urgently need people to sign-up
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Replying to @DECISION_Study
@DECISION_Study explored one of the challenges to including people with impaired capacity to consent in research - how family members make decisions about participation - as part of @NIHRcommunity fellowship funded by @ResearchWales #TrialConductResearch cardiff.ac.uk/centre-for-tri…

DECISION

Family members’ experiences of informed consent and proxy decision making for research involving adults lacking capacity.

cardiff.ac.uk
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If you want to make sense of why the UK government are making the decisions they are making with regard to coronavirus: they have prepared over the last decade for a pandemic (focusing on pandemic flu) and the strategy and evidence based is public gov.uk/guidance/pandemic-flu

Pandemic flu

Pandemic flu planning information for England and the devolved administrations, including guidance for organisations and businesses.

gov.uk
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‘He would probably want to help people if he could’: making decisions about research on behalf of people living with #dementia via @VickyLShepherd @DECISION_Study bgs.org.uk/blog/%E2%80%98he-…
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The DECISION study by @VickyLShepherd Family members’ experiences of informed consent & proxy decision making for research involving adults lacking capacity. Results summary video and links to 2 published papers - cardiff.ac.uk/centre-for-tri… @ResearchWales @CR_UK @CUBLSResearch
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The DECISION Study - completed as part of my NIHR Fellowship @ResearchWales - has now been updated on @CTRCardiffUni website to include the lay summary, first publication of results & animation of findings cardiff.ac.uk/centre-for-tri… @DECISION_Study

DECISION

Family members’ experiences of informed consent and proxy decision making for research involving adults lacking capacity.

cardiff.ac.uk
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Essential work and an opportunity to help shape it here 👇🏻
DECISION2@DECISION_Study28 Jan 2019
We are looking for families of people living with dementia, & researchers (esp. research nurses) who recruit people with impaired capacity, to join an event on 25th March in Cardiff to help develop a tool to support decision-making about research @PRIMECentre @CTRCardiffUni
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Interesting abstract exploring accuracy of proxies' predictions with Advanced Directives for Research - measuring accuracy of hypothetical choices contrasts with prelim findings from @DECISION_Study which suggests actual decisions are highly contextualised & aim for authenticity
The Hastings Center for Bioethics@hastingscenter13 Sep 2018
Promoting Research with Organ Transplant Patients & Advance Directives for Research: How Do They Compare with Surrogates’ Predictions of Older Adults’ Preferences? New in IRB: Ethics & Human Research: thehastingscenter.org/public…
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Replying to @DECISION_Study @HealthWiseWales @enrich_research
Great news - congratulations! 🎉
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ENRICH: ENabling Research In CareHomes. Glad to be part of this great initiative supporting homes to take part in research and providing opportunity for their residents. Everyone should have the choice to take part in research no matter were they live or their mental capacity xitter.cf/enrich_research/status…
ENRICH@enrich_research14 Jun 2018
There is a worldwide focus on improving #Carehome Research. Over the past few years we’ve presented ENRICH in lots of countries, facing the same challenges.
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Fantastic @HallmarkCare Greenhill Manor Care Home in Merthyr Tydfil officially enrolled with @EnrichCymru today. Great to meet Karen & team hear about other projects & circulate new studies in #Welsh #carehomeresearch @CadrProgramme @WalesSSCR @myhomelifecymru @enrich_research
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Couldn't agree more, greater equality of access to all care home residents xitter.cf/enrich_research/status…
ENRICH@enrich_research6 Jun 2018
Care research has never been more important. Help us to help residents and register today enrich.nihr.ac.uk join the community #carehome
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Alice Schippers of @IASSIDD on why including people with intellectual disabilities in research matters: "What we have now is only the tip of the iceberg - there is so much knowledge in people’s lived experiences" #LearnInspireLead
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Only 1 in 10 current critical care treatments are based on best quality evidence. Wales is leading the way in finding better ways of involving patients & families in studies vital for improving care for critically ill patients socsi.in/HqlYV #TeamResearch
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PRINCESS Study an example of need for research to include those who lack capacity - #CareHome residents who lack capacity are more frail, increased risk of infection & being prescribed antibiotics so most likely to benefit if probiotic effective #WhyWeDoResearch @CTRCardiffUni xitter.cf/CTRCardiffUni/status/9…
CTRCardiffUni@CTRCardiffUni17 May 2018
Replying to @CTRCardiffUni
Can a probiotic supplement reduce the number of infections in care home residents, to reduce antibiotic use in this vulnerable group and help curb antibiotic drug resistance? #ICTD2018 #TeamResearch @ResearchWales @PRIMECentre @DPMRes @CUBLSResearch @OxPrimaryCare
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Wow! That is the end of the #WhyWeDoResearch tweetchat on research involving adults who lack capacity to consent. Thank you SO much to everyone who joined in! Please see the summary below for more information, training and resources, or feel free to get in touch @VickyLShepherd
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Looking forward to hosting my 1st #WhyWeDoResearch #tweetchat on Wednesday 8pm GMT on 'Research involving adults who lack capacity to consent'. If you are interested in reading more about the topic see photos below, or get in touch if you want a copy of the summary
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How do family members and friends make decisions about whether or not a beloved one living with #dementia should take part in #Research? The @DECISION_Study aims to find it out. We caught up with the CI @VickyLShepherd: ow.ly/ztqM30hRawC
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Check out @DECISION_Study @Brainunitwales @ResearchWales @STEMAmbassadors @Brain_Domain xitter.cf/DECISION_Study/status/…
DECISION2@DECISION_Study5 Nov 2017
Involved in decision about research on behalf of another? Invitation to take part in study exploring decision-making: [email protected]
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Replying to @HDAI_ie
@HDAI_ie @HDAwareness @HDBuzzFeed the decision study might be of interest to you. It is a research study looking at decision making on behalf of others. If you're interested please get in touch @DECISION_Study xitter.cf/DECISION_Study/status/…
DECISION2@DECISION_Study5 Nov 2017
Involved in decision about research on behalf of another? Invitation to take part in study exploring decision-making: [email protected]
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