{"id":2448,"date":"2022-12-06T10:31:29","date_gmt":"2022-12-06T10:31:29","guid":{"rendered":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/?p=2448"},"modified":"2022-12-06T10:56:00","modified_gmt":"2022-12-06T10:56:00","slug":"bridging-the-gap-can-advance-research-planning-help-address-some-of-the-challenges-of-research-with-adults-with-impaired-capacity-to-consent","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/bridging-the-gap-can-advance-research-planning-help-address-some-of-the-challenges-of-research-with-adults-with-impaired-capacity-to-consent\/","title":{"rendered":"Bridging The Gap \u2013 Can Advance Research Planning Help Address Some Of The Challenges Of Research With Adults With Impaired Capacity To Consent?"},"content":{"rendered":"

Bridging The Gap \u2013 Can Advance Research Planning Help Address Some Of The Challenges Of Research With Adults With Impaired Capacity To Consent?<\/h2>\n

In order to include people in research who are unable to provide their own consent to participate, someone close to them is approached to help make a decision on their behalf. This is usually a family member or close friend, but it might be a person who cares for them in a professional capacity if it is not possible to involve family members or friends. They are asked to act as a \u2018consultee\u2019 or \u2018legal representative\u2019 and to decide whether the person they are representing should participate in the study or not based on what, in their opinion, the person\u2019s wishes and feelings would be about taking part.<\/p>\n

Challenges of research involving adults with impaired capacity to consent<\/strong><\/p>\n

Previous research<\/a> has found that people rarely discuss their preferences about research. Family members find it hard to make a decision about research, and many experience an emotional and decisional burden<\/a> as a result. This leads to concerns that proxy decisions about research may not sufficiently reflect peoples\u2019 wishes and preferences. It also contributes to the ethical and practical challenges<\/a> encountered when conducting research involving people with impaired capacity to consent, which results in adults lacking capacity frequently being excluded<\/a> from research.<\/p>\n

\"\"<\/figure>\n

The gap between decisions about care and research<\/strong><\/p>\n

When it comes to decisions about care and treatment, there is an increasing focus on encouraging people to engage in advance care planning<\/a> \u2013 a process which gives people the opportunity to plan their future care and support, including medical treatment, while they have the capacity to do so. This doesn\u2019t currently extend to decisions about participating in research. People are also encouraged to consider making legal arrangements to appoint someone to make decisions on their behalf such as through a Lasting Power of Attorney<\/a>. However, this also does not cover decisions about research, despite moves towards research being embedded in routine care.<\/p>\n

There is a gap between the processes for planning what care we want to receive in the future and who we wish to be involved in making care decisions on our behalf, and the current legal arrangements for research which do not provide a mechanism for expressing our research preferences in advance. It is left until we no longer have capacity, at which point others are appointed as consultees or legal representatives on our behalf and they have to retrospectively determine what our wishes and feelings might be. At least that is the situation in the UK \u2026\u2026<\/p>\n

\"\"<\/figure>\n

Advance planning for research: the story in other countries<\/strong><\/p>\n

Other countries have established processes for planning ahead for research participation. Including Canada where it was introduced several decades ago, and Australia which in 2007 implemented a formal process for researchers to discuss and document views on future research participation with participants who anticipate periods of cognitive impairment. Recently, there have been moves to integrate processes into European legal frameworks, including Germany which requires a directive to be in place for people lacking capacity to consent to be included in some types of research.<\/p>\n

Back in 2009 the Nuffield Council on Bioethics recommended<\/a> that research is needed on the feasibility of developing a non-binding advance statement on research participation which could influence decisions on research participation after loss of capacity, and that serious consideration be given to explicitly extending Lasting Power of Attorney arrangements to include decisions over research. However, there are still no such arrangements in the UK.<\/p>\n

Changes to policy and practice in the UK that enables advance research planning arrangements could support consultees and legal representatives to make preference-based decisions, reduce the burden they experience when acting as proxy, and ensure that people with capacity-affecting conditions have equitable opportunities to participate in and benefit from research.<\/p>\n

Addressing the gap through the CONSULT-ADVANCE Study<\/strong><\/p>\n

As part of the larger CONSULT<\/a> project exploring issues around research involving adults with impaired capacity to consent, the CONSULT-ADVANCE Study is exploring the views of people with personal experience of capacity-affecting conditions, and researchers and other professionals, about advance research planning.<\/p>\n

\"\"<\/figure>\n

We are conducting two online surveys (one survey with members of the public and one with researchers and other professionals) followed by interviews with both public and professional stakeholders.\u00a0 We will use the findings to plan future research and to develop an Advance Research Planning intervention.<\/p>\n

If you would like to share your views on this topic, please get in touch.<\/p>\n

Contact: Vicky Shepherd<\/a><\/p>\n","protected":false},"excerpt":{"rendered":"Bridging The Gap \u2013 Can Advance Research Planning Help Address Some Of The Challenges Of Research With Adults With Impaired Capacity To Consent? In order to include people in research […]","protected":false},"author":1143,"featured_media":2453,"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":[],"class_list":["post-2448","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-events"],"jetpack_publicize_connections":[],"jetpack_sharing_enabled":true,"jetpack_shortlink":"https:\/\/wp.me\/p7dIou-Du","jetpack-related-posts":[{"id":2282,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/unpacking-the-black-box-of-horrendousness\/","url_meta":{"origin":2448,"position":0},"title":"Unpacking the \u2018Black Box Of Horrendousness\u2019","author":"Victoria Shepherd","date":"June 23, 2022","format":false,"excerpt":"How can we address the challenges of conducting trials with adults with impaired capacity to consent? Anyone who has been involved in developing or conducting trials involving people who are unable to provide their own consent to take part (or who has been around researchers involved in these trials) will\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\/CONSULT-logo_title.JPG.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\/CONSULT-logo_title.JPG.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\/CONSULT-logo_title.JPG.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\/CONSULT-logo_title.JPG.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\/CONSULT-logo_title.JPG.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\/CONSULT-logo_title.JPG.png?resize=1400%2C800&ssl=1 4x"},"classes":[]},{"id":3044,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/addressing-the-knowledge-gap-developing-consult-e-learning-on-trials-involving-adults-lacking-capacity-to-consent\/","url_meta":{"origin":2448,"position":1},"title":"Addressing The Knowledge Gap \u2013 Developing CONSULT E-learning On Trials Involving Adults Lacking Capacity To Consent","author":"Victoria Shepherd","date":"December 9, 2024","format":false,"excerpt":"Historically, trials have focused on the number of participants who take part without paying too much attention to whowas being included - or rather, being excluded. More recently, however, there has been growing attention on ensuring that trials are inclusive of groups who are under-served by research. This has led\u2026","rel":"","context":"In "Dissemination Event"","block_context":{"text":"Dissemination Event","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/dissemination-event\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2024\/12\/Image-of-CONSULT-training.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\/2024\/12\/Image-of-CONSULT-training.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2024\/12\/Image-of-CONSULT-training.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\/2024\/12\/Image-of-CONSULT-training.png?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2024\/12\/Image-of-CONSULT-training.png?resize=1050%2C600&ssl=1 3x"},"classes":[]},{"id":1731,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/nihr-fellowship-project-exploring-research-involving-adults-lacking-capacity-to-consent-our-public-and-patient-involvement-journey\/","url_meta":{"origin":2448,"position":2},"title":"NIHR Fellowship Project Exploring Research Involving Adults Lacking Capacity To Consent \u2013 Our Public And Patient Involvement Journey","author":"Victoria Shepherd","date":"October 28, 2019","format":false,"excerpt":"Project exploring research involving adults who lack capacity to consent For the past 3 years I have been conducting a project exploring the ethical, legal, and practical challenges that may be encountered when involving people with impaired capacity in research. The project, titled \u2018Informed consent and proxy decision making in\u2026","rel":"","context":"In "Patient and Public Involvement"","block_context":{"text":"Patient and Public Involvement","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/patient-and-public-involvement\/"},"img":{"alt_text":"","src":"https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2019\/10\/consent-2052051_pixabay.jpg?resize=350%2C200&ssl=1","width":350,"height":200},"classes":[]},{"id":6603,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/reaching-an-accord-addressing-consent-based-challenges-to-improve-inclusivity-in-research\/","url_meta":{"origin":2448,"position":3},"title":"Reaching an ACCORD? Addressing consent-based challenges to improve inclusivity in research","author":"Victoria Shepherd","date":"April 29, 2026","format":false,"excerpt":"Consent as a barrier to inclusion in research A global ageing population brings a rise in the number of people living with conditions and disabilities that can affect their ability to make decisions, including the ability to consent to research. Research is key to improving the health and well-being of\u2026","rel":"","context":"In "Inclusivity"","block_context":{"text":"Inclusivity","link":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/category\/inclusivity\/"},"img":{"alt_text":"","src":"","width":0,"height":0},"classes":[]},{"id":985,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/whywedoresearch-tweetchat-on-research-involving-adults-who-lack-capacity-to-consent\/","url_meta":{"origin":2448,"position":4},"title":"#WhyWeDoResearch Tweetchat On Research Involving Adults Who Lack Capacity To Consent","author":"Victoria Shepherd","date":"May 24, 2018","format":false,"excerpt":"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 start a conversation about research between all involved. It has quickly become a global phenomenon reaching over 22 countries. The\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\/2018\/05\/Slide-1-Title.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\/2018\/05\/Slide-1-Title.png?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2018\/05\/Slide-1-Title.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\/2018\/05\/Slide-1-Title.png?resize=700%2C400&ssl=1 2x"},"classes":[]},{"id":751,"url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/mental-capacity-action-in-research-event\/","url_meta":{"origin":2448,"position":5},"title":"Mental Capacity Action in Research Event","author":"Victoria Shepherd","date":"March 27, 2017","format":false,"excerpt":"The National Mental Capacity Forum and Health and Care Research Wales recently hosted the Mental Capacity: Action in Research conference in Cardiff, which aimed to bring together researchers and other key stakeholders (including research participants) from across the UK to develop a consensus about improving access to health and social\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\/2017\/03\/MCA_HCRW.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\/2017\/03\/MCA_HCRW.jpg?resize=350%2C200&ssl=1 1x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/MCA_HCRW.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\/2017\/03\/MCA_HCRW.jpg?resize=700%2C400&ssl=1 2x, https:\/\/i0.wp.com\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2017\/03\/MCA_HCRW.jpg?resize=1050%2C600&ssl=1 3x"},"classes":[]}],"meta_box":[],"jetpack_featured_media_url":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-content\/uploads\/sites\/499\/2022\/12\/CONSULT.png","_links":{"self":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/2448","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=2448"}],"version-history":[{"count":3,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/2448\/revisions"}],"predecessor-version":[{"id":2456,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/posts\/2448\/revisions\/2456"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/media\/2453"}],"wp:attachment":[{"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/media?parent=2448"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/categories?post=2448"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/wp-json\/wp\/v2\/tags?post=2448"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}