{"id":1731,"date":"2019-10-28T13:43:47","date_gmt":"2019-10-28T13:43:47","guid":{"rendered":"http:\/\/blogs.cardiff.ac.uk\/centre-for-trials-research\/?p=1731"},"modified":"2022-04-13T13:59:10","modified_gmt":"2022-04-13T13:59:10","slug":"nihr-fellowship-project-exploring-research-involving-adults-lacking-capacity-to-consent-our-public-and-patient-involvement-journey","status":"publish","type":"post","link":"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\/","title":{"rendered":"NIHR Fellowship Project Exploring Research Involving Adults Lacking Capacity To Consent \u2013 Our Public And Patient Involvement Journey"},"content":{"rendered":"\n

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Project exploring research involving adults who lack\ncapacity to consent<\/strong><\/h2>\n\n\n\n

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<\/a>, titled \u2018Informed consent and proxy decision making in research involving adults lacking capacity: development of an intervention to support proxy informed decision making, set within ethical and legal frameworks\u2019, was part of a National Institute for Health Research (NIHR) Fellowship funded by Health and Care Research Wales. A p<\/a>revious blog<\/a> explained how the project came about. <\/p>\n\n\n\n

Importance of including people with impaired capacity in\nresearch<\/strong><\/h2>\n\n\n\n

Research is needed in order for improvements to be made to\nthe health and social care provided, however, some people may be unable to\ndecide for themselves about whether or not to take part in a research study due\nto a cognitive impairment. Currently, people who are unable to provide consent\nto take part in research are more likely to be excluded from research. But with\nincreasing numbers of adults living longer, leading to more people with\nconditions like dementia, it is important that these groups are included in\nresearch. <\/p>\n\n\n\n

\u2018Proxy\u2019 decisions about research participation<\/strong><\/h2>\n\n\n\n

When someone is unable to make their own decisions, a family\nmember or friend may be asked to act as a \u2018proxy\u2019 to be involved in making\ndecisions on their behalf. However, decisions about research are complicated,\nand currently there is no information or support available for proxy decision\nmakers. This project aimed to explore the ethical and legal factors involved in\nproxy decisions about research, understand how families make decisions through\nthe DECISION\nStudy<\/a>, and establish what support might help families when making such decisions.\nThe final part of the project was to develop a support tool that is suitable to\nbe used by families and friends when making decisions for adults lacking\ncapacity to consent to research.<\/p>\n\n\n\n

Involving patients and members of the public in research<\/strong><\/h2>\n\n\n\n

Involving members of the public and patients in research is\nincreasingly being seen as an essential part of how research is identified,\nprioritised, designed, conducted and disseminated. INVOLVE<\/a>, the national advisory group, which\nis part of and funded by the NIHR defines public involvement as research being\ncarried out \u2018with\u2019 or \u2018by\u2019 members of the public rather than \u2018to\u2019, \u2018about\u2019 or\n\u2018for\u2019 them. This includes working with research funders to prioritise research,\noffering advice as members of a project steering group, commenting on and\ndeveloping research materials, and undertaking interviews with research\nparticipants. Patient and public involvement (PPI) includes involving patients,\npotential patients, carers and people who use health and social care services\nas well as people from organisations that represent people who use services. Public\nand patient involvement and engagement is also a core\nelement<\/a> in our work at the Centre for Trials Research.<\/p>\n\n\n\n

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Public and patient involvement and engagement is an important focus at the Centre for Trials Research, and is co-ordinated through a central hub.<\/figcaption><\/figure>\n\n\n\n

Public Involvement in the \u2018Proxy Consent\u2019 Fellowship\nproject<\/strong><\/h2>\n\n\n\n

Active public involvement was an essential part of this\nresearch project. Prior to starting the project, two members of the public were\ninvited to form a lay advisory panel (supported by funding from Health\nand Care Research Wales<\/a>) to review the funding application and initial draft\nof the plain English summary. Once the project was funded, two additional\nmembers were recruited to join the lay advisory panel. <\/p>\n\n\n\n

The project has benefitted enormously from their support\nfrom the first drafting of the research questions, through to ensuring the\ninformation provided to potential DECISION Study participants was accessible\nand appropriate, and the development of the intervention itself. Their lived\nexperience as carers, family members, and advocates of people with a range of cognitive\nimpairments has made a significant contribution to the project as a whole, and\nparticularly during the development of the decision support intervention. <\/p>\n\n\n\n

Sharing our Patient and Public Involvement journey <\/strong><\/h2>\n\n\n\n

Members of the public get involved in research for a variety\nof reasons, including a desire to improve the quality of care or improve\ntreatments either for themselves or for others with a similar condition or to give\nsomething back and help others. Involvement in research can also increase peoples\u2019\nconfidence and knowledge and help them to develop new skills. An important part\nof involving the public is to recognise and value the contribution they make to\nthe research project.<\/p>\n\n\n\n

Towards the end of the project we thought it would be useful\nand interesting to \u2018map out\u2019 our PPI journey throughout the project to help\nidentify when and how the involvement of the lay advisory group helped shape\nthe project. Together we designed a map of the journey with additional\ninformation provided about their involvement at various stages. <\/p>\n\n\n\n

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These two images then formed a poster which was presented at\nHealth and Care Research Wales\u2019 2019 annual conference with the members of the\nlay advisory group as co-authors.<\/p>\n\n\n\n

Involvement in public engagement activities <\/strong><\/h2>\n\n\n\n

Engagement is defined by INVOLVE as the process of information and knowledge about research being provided and disseminated to audiences. Examples of engagement include science festivals, public awareness raising, and dissemination of the findings of a study to research participants or members of the public. For this project, the lay advisory group had a key role in helping draft the findings from the research, particularly those from the DECISION Study, for dissemination to the participants and wider public audiences. This included providing written summaries of the findings which were sent to all those who had taken part and posted on the Centre\u2019s website, as well as a short animation of the findings which were uploaded to You Tube. A link to the animation was also sent to participants and shared on social media. <\/p>\n\n\n\n