{"id":985,"date":"2018-05-24T14:13:51","date_gmt":"2018-05-24T14:13:51","guid":{"rendered":"http:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/?p=985"},"modified":"2022-04-13T13:59:10","modified_gmt":"2022-04-13T13:59:10","slug":"whywedoresearch-tweetchat-on-research-involving-adults-who-lack-capacity-to-consent","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/whywedoresearch-tweetchat-on-research-involving-adults-who-lack-capacity-to-consent\/","title":{"rendered":"#WhyWeDoResearch Tweetchat On Research Involving Adults Who Lack Capacity To Consent"},"content":{"rendered":"

Background to the #WhyWeDoResearch campaign<\/strong><\/h2>\n

The hugely successful #WhyWeDoResearch<\/a> social media campaign was established in 2014 to raise research awareness and opportunities to staff, patients and the public, and to start a conversation about research between all involved. It has quickly become a global phenomenon reaching over 22 countries. The Tweetfest is a timetable of tweetchats that cover a wide range of topics that are of interest to members of the research community, patients and public. Each tweetchat is hosted by an experienced \u2018expert\u2019 on the topic and encourages discussion by posting and responding to a series of questions on the topic. The tweetchats are open to everyone who wishes to join the discussion by adding the hashtag #WhyWeDoResearch to their responses. The third annual #WhyWeDoResearch Tweetfest took place in the week running up to International Clinical Trials Day on 20th<\/sup> May, and was arranged by Hazel Smith, Research Coordinator in the Paediatric ICU at Our Lady\u2019s Children\u2019s Hospital, Crumlin.<\/p>\n

Research involving adults who lack capacity to consent<\/strong><\/h2>\n

My current research<\/a> focuses on the legal, ethical and practical issues surrounding the involvement in research of adults who lack capacity to consent as part of an NIHR Doctoral Research Fellowship funded by Health and Care Research Wales. A previous blog<\/a> describes how my interest in this area developed from my role as a critical care nurse turned researcher. It is a subject that generates many questions and seemed like a topic that might be of interest for a tweetchat.<\/p>\n

The tweetchat was particularly good timing as one of the studies from my Fellowship had just been published in the Journal of Medical Ethics. Our study<\/a> found that the majority of health and social care professionals who participated lacked knowledge and understanding about the legal situation regarding adults lacking capacity in research. This included those who recruit participants, as well as Principle and Chief Investigators.<\/p>\n

\"\"<\/p>\n

The study also revealed a deeper issue about attitudes towards the inclusion of people with impaired decision-making capacity in medical research, which we wrote about in a Journal of Medical Ethic blog<\/a>.<\/p>\n

So, it seemed like a great opportunity to discuss some of these issues with the #WhyWeDoResearch community, and to hear their thoughts and share their experiences.<\/p>\n

The #WhyWeDoResearch tweetchat discussion<\/strong><\/h2>\n

Over forty people, including both clinical and academic researchers, joined the discussion on research involving adults who lack capacity to consent. They joined from various parts of the UK, Ireland and the US. \u00a0Four questions were used to facilitate the tweetchat by introducing the topic, identifying some of the challenges encountered, and thinking about what support or resources might be helpful. The responses are summarised by question below.<\/p>\n

 <\/p>\n

\"\"<\/p>\n

\"\"<\/p>\n

 <\/p>\n

\"\"<\/p>\n

\"\"<\/p>\n

 <\/p>\n

\"\"<\/p>\n

\"\"<\/p>\n

 <\/p>\n

\"\"<\/p>\n

\"\"<\/p>\n

Feedback after the #WhyWeDoResearch tweetchat<\/strong><\/h2>\n

The response was overwhelming with nearly 500 tweets\/retweets during the hour! After the event people posted comments about how interesting and useful the tweetchat had been, and how much they had learned about the topic. The conversation has continued since too, with people getting in touch to ask follow-up questions or request advice or input into developing new resources.<\/p>\n

Hosting a tweetchat has been a hugely valuable way to engage with lots of people with an interest in the topic, who have a range of experiences and views to share. It is a fantastic opportunity to communicate key aspects of the topic in a way that other traditional methods of dissemination and engagement would not. It also allows for two-way communication with the research community that can help identify areas where more support is needed, which helps shape my future plans. It is great fun too. Highly recommended!<\/p>\n

\"\"<\/p>\n

 <\/p>\n

\"\"<\/p>\n

Shepherd V<\/strong>, Griffith R, Sheehan M, et al Healthcare professionals\u2019 understanding of the legislation governing research involving adults lacking mental capacity in England and Wales: a national survey Journal of Medical Ethics. 25 April 2018. doi: 10.1136\/medethics-2017-104722<\/a><\/p>\n

Shepherd V<\/strong>. Research involving adults lacking capacity to consent: the impact of research regulation on \u2018evidence biased\u2019 medicine.<\/p>\n

BMC Medical Ethics. 2016 17:55 https:\/\/doi.org\/10.1186\/s12910-016-0138-9<\/a><\/p>\n

 <\/p>\n

\"\"<\/p>\n

\"\"<\/p>\n

 <\/p>\n

 <\/p>\n","protected":false},"excerpt":{"rendered":"Background to the #WhyWeDoResearch campaign The hugely successful #WhyWeDoResearch social media campaign was established in 2014 to raise research awareness and opportunities to staff, patients and the public, and to […]","protected":false},"author":1143,"featured_media":997,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_publicize_message":"","jetpack_publicize_feature_enabled":true,"jetpack_social_post_already_shared":true,"jetpack_social_options":{"image_generator_settings":{"template":"highway","default_image_id":0,"font":"","enabled":false},"version":2},"jetpack_post_was_ever_published":false},"categories":[7],"tags":[25,64],"class_list":["post-985","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events","tag-care-homes","tag-tweetchat"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p7dIou-fT","jetpack-related-posts":[{"id":1934,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/rdcs-funding-application-virtual-workshop-2020\/","url_meta":{"origin":985,"position":0},"title":"RDCS Funding Application Virtual Workshops 2020","author":"Philip Pallmann","date":"November 11, 2020","format":false,"excerpt":"Our first virtual event On Monday, 5th\u00a0October the Research Design and Conduct Service (RDCS) South East Wales hosted its first ever virtual funding application workshop. In previous years, the RDCS had held its annual grant writing retreat either as a one-day event at Birchwood House, Cardiff or as a residential\u2026","rel":"","context":"In "Events"","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2020\/11\/RDCS-EVENT-2020-10-05.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2020\/11\/RDCS-EVENT-2020-10-05.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2020\/11\/RDCS-EVENT-2020-10-05.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2020\/11\/RDCS-EVENT-2020-10-05.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2020\/11\/RDCS-EVENT-2020-10-05.jpg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2020\/11\/RDCS-EVENT-2020-10-05.jpg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":2194,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/one-more-reason-why-access-to-health-and-care-data-is-important-to-our-wellbeing\/","url_meta":{"origin":985,"position":1},"title":"One More Reason Why Access To Health And Care Data Is Important To Our Wellbeing","author":"Joanne Euden","date":"March 17, 2022","format":false,"excerpt":"One of the Patient and Public Involvement (PPI) members for the\u00a0PEACH study, Graham Prestwich, discusses their involvement with the study, with a particular emphasis on how the team are processing patient data without consent, and the importance of such practices during a global pandemic when research needs to move fast\u2026","rel":"","context":"In "Events"","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/Graham-P.jpg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/Graham-P.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/Graham-P.jpg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/Graham-P.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/Graham-P.jpg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/03\/Graham-P.jpg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":186,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/scope2-can-increasing-the-dose-of-radiotherapy-improve-outcomes-in-patients-with-oesophageal-cancer\/","url_meta":{"origin":985,"position":2},"title":"SCOPE2: Can Increasing The Dose Of Radiotherapy Improve Outcomes In Patients With Oesophageal Cancer?","author":"Ruby Ray","date":"April 26, 2016","format":false,"excerpt":"SCOPE2 is a randomised Phase II\/III trial to study radiotherapy dose escalation in patients with oesophageal cancer treated with definitive chemo-radiation with an embedded Phase II trial for patients with a poor early response using positron emission tomography (PET). SCOPE2\u00a0is a Cancer Research UK\u00a0funded trial run by the Wales Cancer\u2026","rel":"","context":"In "Cancer Trial"","block_context":{"text":"Cancer Trial","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/cancer-trial\/"},"img":{"alt_text":"SCOPE2 Workshop delegates.","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/04\/SCOPE2-Workshop.jpeg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/04\/SCOPE2-Workshop.jpeg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/04\/SCOPE2-Workshop.jpeg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2016\/04\/SCOPE2-Workshop.jpeg?resize=700%2C400&ssl=1 2x"},"classes":[]},{"id":1720,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/nihr-doctoral-fellowship-interview-with-tim-pickles\/","url_meta":{"origin":985,"position":3},"title":"NIHR Doctoral Fellowship: Interview with Tim Pickles","author":"Timothy Pickles","date":"October 8, 2019","format":false,"excerpt":"Tim Pickles is a statistician and NIHR Doctoral Fellow in the Centre for Trials Research, a UKCRC-registered clinical trials unit based at Cardiff University. Here he talks about his Fellowship journey so far, and his ambitions for the future. Background What Fellowship was awarded? I have been awarded an NIHR\u2026","rel":"","context":"In "Events"","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/10\/Tim-Pickles-NIHR-Doctoral-Fellow-Blog.jpeg?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/10\/Tim-Pickles-NIHR-Doctoral-Fellow-Blog.jpeg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/10\/Tim-Pickles-NIHR-Doctoral-Fellow-Blog.jpeg?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/10\/Tim-Pickles-NIHR-Doctoral-Fellow-Blog.jpeg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/10\/Tim-Pickles-NIHR-Doctoral-Fellow-Blog.jpeg?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/10\/Tim-Pickles-NIHR-Doctoral-Fellow-Blog.jpeg?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":2275,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/international-clinical-trials-day-poem\/","url_meta":{"origin":985,"position":4},"title":"International Clinical Trials Day Poem","author":"Claire Nollett","date":"June 21, 2022","format":false,"excerpt":"On 20th May, the CTR recognised International Clinical Trials Day with an online event celebrating public involvement in our research. Three members of the public \u2013 Margaret Ogden, Jane Leahy and Julie Hepburn - kindly shared their experiences of working with us as Research Partners on three very different studies.\u2026","rel":"","context":"In "Events"","block_context":{"text":"Events","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/events\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/06\/ICTD-2022.png?resize=350%2C200&ssl=1","width":350,"height":200,"srcset":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/06\/ICTD-2022.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/06\/ICTD-2022.png?resize=525%2C300&ssl=1 1.5x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/06\/ICTD-2022.png?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/06\/ICTD-2022.png?resize=1050%2C600&ssl=1 3x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/06\/ICTD-2022.png?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":2144,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/one-year-of-the-pronto-trial-challenges-observed-and-overcome-during-a-global-pandemic\/","url_meta":{"origin":985,"position":5},"title":"One Year Of The PRONTO Trial: Challenges Observed And Overcome During A Global Pandemic","author":"Joanne Euden","date":"November 18, 2021","format":false,"excerpt":"What Is Sepsis? Sepsis, blood poisoning, septicaemia\u2026whatever word you are familiar with, it remains one of the most common complications of infection seen in hospital Emergency Departments (ED)s across the UK and is characterised by an unregulated host response to bacterial infection. Optimal treatment for sepsis includes prompt antibiotics into\u2026","rel":"","context":"In "Antibiotics"","block_context":{"text":"Antibiotics","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/antibiotics\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/img.youtube.com\/vi\/H3x-rNVlwJI\/0.jpg?resize=350%2C200","width":350,"height":200},"classes":[]}],"meta_box":[],"jetpack_featured_media_url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/05\/Slide-1-Title.png","_links":{"self":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/985","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/users\/1143"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/comments?post=985"}],"version-history":[{"count":5,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/985\/revisions"}],"predecessor-version":[{"id":1004,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/985\/revisions\/1004"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/media\/997"}],"wp:attachment":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/media?parent=985"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/categories?post=985"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/tags?post=985"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}