Table 2 Strategies to support the implementation of ARP and address inequalities

Use of targeted messaging and support for individuals and organisations

Implementation of ARP will rely on introducing it as a concept, and using a stakeholder-informed approach to provide information about why and how to engage that aligns with different stakeholders’ informational and support needs. This will include those likely to be directly involved in ARP discussions, as well as more broadly across care and research ecosystems, and beyond.

‘You’ve got to have branding, a logo, a snazzy title, you’ve got to tell them why it’s important’ [ID 13, person living with a capacity-affecting condition]

‘I think that whilst it would be nice to have it more generic, I think the uptake would be better if it could be more specific. I think sort of targeting it would be better’ [ID 12, HCP]

A unified and co-ordinated approach is needed, including stakeholder mapping, the development of a behaviourally informed suite of information and resources to support ARP (including training), and an integrated communication and marketing strategy. However, organisations that have strong associations with particularly relevant populations could help target and amplify the key messages.

Advance Care Planning Canada is an organisation which has coordinated and innovative strategies to support the uptake of advance care planning (ACP) in Canada. This includes a national ACP Day with taglines such as ‘If not you, who?’ There is a suite of resources for health care professionals, lawyers, and members of the public.

Link: https://www.advancecareplanning.ca/

Building inclusive community engagement and support to help widen opportunities for engaging with ARP

Communities can play a key role in raising awareness about ARP and supporting opportunities for people to engage with ARP. They can also help to ensure that these opportunities are open to groups who are currently under-served by research and are less likely to have access to ARP opportunities if they are embedded solely on traditional research and care services and infrastructure.

‘It is working with those community groups within those communities that don’t engage well with health services (or with any organisational services) because they feel excluded, or they don’t know they’re there, or they don’t know how to navigate it. To get their engagement you really have to reach in and be prepared to take that time to go back and …. it is finding people within those community groups who are willing to advocate for research and advocate for taking that message … and saying ‘this is about you’’ [ID 12, HCP]

Engaging with communities and community organisations will require appropriate support and resources to avoid overburdening them and to minimise the risk of any unintended consequences (e.g. misinformation, impact on trust).

The PANORAMIC study is a UK clinical trial testing different antiviral treatments for COVID-19 in the community. Underserved communities, such as ethnic minorities and people with learning disabilities, have been disproportionately affected by the COVID pandemic and so it was important to ensure that everyone has the opportunity join the PANORAMIC study. The study team worked with a diverse range of community groups to provide resources to raise awareness about the study. This included videos of translated information about the study, and accessible versions of the participant information sheets.

Link: https://www.panoramictrial.org/community-outreach

Signposting to ARP by relevant organisations

Organisations providing information and support about health, wellbeing or research can also play a valuable role in raising awareness about ARP and supporting opportunities for people to engage with ARP if they wish. These might include condition- or population-specific organisations, those supporting volunteering activities more broadly, or those currently sharing research opportunities. They could provide introductory context-specific information tailored for their audience(s), alongside links to core information and ARP resources which can be accessed by those who are interested.

‘I think if people are already generally looking at those things, then that probably would be a useful place to put a link that then takes them to another website if it is something that they’re interested in’ [ID 12, HCP]

Building on the core suite of information and ARP resources, organisations should be supported to co-produce context-specific information with those who access their services. A feedback loop will also need to be established to ensure that the context-specific information and core ARP resources are harmonised in line with feedback from those accessing them and updated when required.

Many organisations provide information and resources about making a power of attorney, including charities that support people with potentially capacity-affecting conditions. This includes Alzheimer’s Society who have a webpage of resources, including videos and audio versions of the information. For people who don’t have access to the internet, or don’t feel able to complete the forms online, Alzheimer’s Society offers a telephone support line. The forms are completed on the person’s behalf by a trained volunteer using an official online tool created by Office of the Public Guardian.

Link: https://www.alzheimers.org.uk/get-support/legal-financial/lasting-power-attorney

Integrating ARP with other advance planning and research activities

ARP requires building on an initial foundation of motivation, capability, and opportunities which may arise through other activities around advance planning, legal arrangements, research participation, or more general altruistic or community engagement. Integrating ARP opportunities with these will increase both the reach and accessibility of ARP activities.

‘There’s an opportunity to kind of create a bundle together, the discussions [about organ donation, blood donation, LPA, participating in research, etc] and raising awareness’ [ID 23, member of the public]

Integrating ARP with other activities will require a systems-level approach to map the processes and partner organisations involved, and identify opportunities for embedding ARP. It will require cross-sector working to establish these new pathways and the use of theory-informed approaches to explore issues around usability and sustainability.

Western Australia’s Advance Health Directive (AHD) which enables people to communicate their preferences about their medical treatment was recently amended to include decisions about the types of medical research people would consent or refuse consent to take part in. It can be completed in paper or electronic formats, and there is an accompanying guidance booklet and short instructional videos to help people to complete it. Once completed, it can be uploaded to a central portal with other health records.

Link: https://pch.health.wa.gov.au/en/Healthy-WA/Articles/A_E/Advance-Health-Directives

Create tools to support people to involve their family members in the ARP process

Involving family members in the ARP process may support people to think about research, express their preferences about taking part in future research, revisit and update those preferences if they wish, and facilitate the use of an advance research directive if completed.

‘Being part of that discussion would certainly help family members to feel able to carry out those wishes, as opposed to somebody else finding a piece of paper saying, ‘Well you know, your Mum said this’ and it’s like ‘We don’t know anything about that, where’s that come from’’? [ID 12, HCP]

‘The chances are by having signed the form they probably will know about it’ [ID 10, HCP]

‘It relies on the consultee understanding research and having had a conversation with that person about the boundaries of their preferences’ [ID 11, researcher]

Involving a family member or another trusted person in ARP discussions will help support the person to effectively engage with ARP and ensure that they are aware of the person’s wishes and whether they have completed an advance research directive. This will help prepare the family member to act as the person’s consultee/representative, including highlighting that a document has been completed and providing access where possible. It will also help them to interpret the preferences it contains within the context of the person’s current situation, thereby ensuring that participation decisions align with their wishes. Resources to support ARP will need to include information and guidance for family members.

Although the processes for organ donation have changed in recent years across the UK nations, the NHS has a central website of information for members of the public. This includes information about the choices for opting out and gives a clear message that people should talk to their loved ones as they will always be involved. It includes a series of tips for how to have a conversation about organ donation, such as ‘finding a talking point’.

Link: https://www.organdonation.nhs.uk/