Planning your Event

For many projects, the involvement of individuals and communities with first-hand lived experience is critical to upholding and ensuring that the processes and outcomes developed are effective, inclusive, and equitable. This can involve hosting different events that are attended by people with lived experience and other members of the public, as well as researchers, clinical staff, and other professionals.

This section provides guidance and considerations for how to design and host an inclusive event for a diverse audience of people with lived experience.

These recommendations are not an exhaustive list, and it is always important to include a specific representative or person with lived experience in the event planning to ensure that your event is tailored to the needs of your specific attendees and organized without barriers to participation. Their inclusion in decision-making processes is essential to achieving an accessible and inclusive event.

By involving your community in the event organization, it also maximizes their contribution of expertise and experience to the event’s field of study.

Helpful Resources within The Turing Way

Prerequisite	Importance	Notes
Organising a Conference	Essential	Checklists and recommendations for planning conferences
Organising Remote Meetings	Essential	Checklist and suggestions for organizing meetings
Tools for Collaboration	Helpful	Suggestions for tools that are useful when planning and running events
Guidelines for Remote Collaboration	Helpful	Guidance on running remote events
Valuing Diversity and Differences	Helpful	Useful for thinking about how to be inclusive when collaborating with a diverse team

Accessibility and Inclusion: What to focus on

When designing and organising an event, it can be easy to focus on accessibility requirements at the venue, and overlook the steps needed to make an event inclusive and enjoyable for all participants.

We can think of this in terms of “Universal Design” which is about designing an event or environment so that it can be accessed, understood, and used by all people regardless of their background, age, size, ability, or disability. This is different from “Accessible Design” which focuses on designing around specific accessibility requirements.

An example of Universal Design is the “Curb Cut effect” which is where curbs on sidewalks and paths are sloped down to meet the main pavement. Cutting the curb and adding a slope was originally suggested to allow wheelchair access to the street without having to step down from a high curb. This change also benefits most other pedestrians, as well as people who use prams, cyclists, people with mobility aids, and young people meaning that adding curb cuts made walkways and street crossings easier to use for everyone. You can read more about Universal Design on the Universal Design Website, however, you do not need to be an expert in design to organize an inclusive and accessible event.

A core feature of PPIE is that members of the public and other non-researchers are actively involved in the research, and this will also be true for your events. When thinking about how to be inclusive of people with lived experience at your event, ensure that you plan beyond just the accessibility requirements that focus on disabilities. Using Universal Design to plan your event allows you to take into account what changes can be made to make your event accessible to a wider audience. For example, recording your sessions and using closed caption software can remove barriers for people with disabilities, and will also benefit a much wider audience. Similarly, improving the signposting will benefit both members of the public who are new to research events, but also early career researchers that have less experience in attending events.

This chapter and the examples used in it focus heavily on aspects that are relevant when organising events in which members of the public are expected to attend, based on a universal design framework and an understanding of how the considerations benefit a wide audience as well as members of the public who may be attending your event as people with lived experience.

This chapter is not designed to replace general recommendations and guidelines for running accessible events for people with disabilities, as those will apply to your event planning regardless of whether members of the public are attending them or not. At the relevant places, we have linked to the existing “Accessible Events” chapters and recommend referring to these for specific accessibility practices.

If your attendees have accessibility requirements, please ensure that those are planned for and met, in addition to taking a universal design approach.

Planning - Logistics

Planning an event involves many stages that can vary in length depending on the size and resources required. This section addresses some suggested areas for consideration for events that include people with lived experience as attendees.

At each stage, your planning documents should reflect an emphasis on accessible and inclusive universal design.

Initial Planning

An event that will be attended by people with lived experience may be different to events planned for an audience consisting only of researchers and research staff.

Being inclusive at the planning stages ensures that people without lived experience are not making decisions for people with lived experience. To prevent this, consider and define how you will actively involve community representatives or people with lived experience in the event planning process. This will help to ensure both a diverse perspective, and help your event uphold the research goals of co-creation and public involvement.

Examples of how you can implement this would be to consider inviting and including representatives and public advisors into the event planning committee, or alternatively consider hosting town halls and feedback forums that can support and make space for a large audience of people with lived experience to share their perspectives and help steer your event towards success. You could also consider hosting some focus group sessions at regular stages to get feedback on your plans.

At this stage it is important to consider who your event will be inviting and if there will be any promotional or “product demonstration” content at your event. For example, there are ethical and potential consumer regulation considerations if your event hosts sales or promotional teams from medical device or pharmaceutical companies. Depending on the country, there may be regulations around direct promotion to consumers or users of a product which will restrict the amount of involvement that members of the public will be able to have at your event. Specific thought should be given for how to include members of the public at events which may showcase regulated products. Ensure that you identify what considerations need to be made in order to facilitate appropriate knowledge sharing within an inclusive research space to make the most of our your event while also safeguarding all attendees.

Note

If you are able to collaborate with members of the community, please consider how you will recognize or reimburse the time and contributions made. This may involve an honorarium for attending planning meetings and for time spent reviewing policies and other documents.

You could also consider hosting some focus group sessions at regular stages to get feedback on your plans.

Where possible, the expertise and labour of people with lived experience should be recognized and renumerated.

Scoping the Event

As part of the initial planning, it is important to clearly define the event’s goals, understand the intended audience and potential attendees, and identify how your event will ensure the active inclusion and involvement of people with lived experiences.

When scoping these questions, consider establishing a planning committee that can represent the public and patient populations.

To identify the event’s purpose and outcomes, carefully consider your target audience and the reasons behind their inclusion. Consider documenting this alongside your planning committee or with input from people with lived experience.

It is important at this stage to define and document the purpose of public involvement in the event, and doing so alongside a representative or members of the public with lived experience will help to identify how best to design an event that is beneficial and inclusive for your attendees.

Preliminary Content Planning

By involving representatives or getting feedback from members of the public you will also be able to scope and identify topic areas and event content that will be relevant and inclusive of your audience, as well as facilitating their contribution to the event. Consider how you can co-develop a program and identify event content that supports various perspectives, backgrounds, and needs. This will allow you to create an agenda that fosters an inclusive and engaging experience for everyone involved.

Considering Accessibility Practices

During the initial planning, it is also important that organisers identify the accessibility practices relevant to all attendees and establish plans to implement these practices. These practices should be discussed and defined by the expected attendees, including people with lived experience. Accessibility practices to consider include those for cognitive, sensory, and physical disabilities, communication modes, scheduling breaks and allowing for participation from multiple time zones, use of plain language, as well as additional practices related to your specific event.

Addressing Power Dynamics

For events where attendees are members of the public and non-researchers, acknowledging and addressing the power and privilege differences between the members of the public and researchers will be an important part of creating an inclusive environment where the attendees with lived experience can engage equitably at an event.

It can be helpful to acknowledge that people with lived experience are “experts by experience” to help establish equal footing with professionals and researchers who are “experts by profession”.

Your event may be the first event of this type attended by people with lived experience and members of the public, and many attendees may not have pursued higher education compared with attendees who may be researchers by profession. People with lived experience may be affected by systemic discrimination and may not have had similar educational and career opportunities, and may have experienced barriers like medical ableism and medical racism. This can create a significant power imbalance due to comfort and experience at the event. It is also important to recognize that people with lived experience can be researchers as well.

Networking and social components of the event may feel less welcoming to people with lived experience if they do not know anyone before attending. Researchers may attend with some of their regular co-workers or know other attendees already beforehand (especially in niche fields). Thus, they may be more comfortable joining discussions with others at your event, compared to members of the public that are not embedded in such pre-existing social networks. Try to consider ways to open discussion between attendees to avoid a social separation between researchers and members of the public.

Additionally, many signifiers of social class can be learned and acquired by research professionals during their career, such as how to present and speak confidently, familiarity with technology and scientific advances, as well as general comfort navigating university campuses. When unaddressed, many members of the public with lived experience may feel unwelcome at research-focused events and feel unable to take part due to a perceived difference in experience and power. Where possible, try to surface hidden knowledge such as what to wear, when to ask questions during a talk, and provide tutorials and instruction for all attendees if your event requires the use of a particular technology like Slack or Slido.

There are many ways to address the power imbalance and it is best to get recommendations from your community to tailor to your event. Building rapport and respect between attendees will help your event foster meaningful collaboration and knowledge exchanges between researchers and people with lived experience.

During the opening session, set an expectation for open and respectful dialogue between all attendees and create spaces where attendees can ask questions, share their perspective, and engage meaningfully in conversations. Upholding a respectful dialogue throughout your event may require active facilitation of conversations to include attendees with lived experience having time to speak and to ensure that a respectful dialogue is maintained.

It can also be useful to allow attendees to self-identify and differentiate by interest rather than by profession. For example by labelling networking tables with a topic, or putting only names and pronouns on name badges instead of including someone’s name, profession, and university affiliation or workplace.

Consider the ethos and values that your event and community holds when planning what research to invite and uplift at your event. Research projects have historically been focused on academic interest and the pursuit of knowledge without considering the goals and needs of communities with lived experience. For example, autistic and deaf people have emphasised that their communities do not prioritize searchs for a cure because of the experience, culture, language they have and the validity of their identities. Instead their communities advocate for their involvement in research that addresses and improves their lived experience and quality of life. By highlighting research that aligns with the goals and values of your community, your event can contribute to the balancing and awareness of the power dynamic between researchers and public contributors.

Depending on the event length and the resources available, it may be helpful to provide training on effective communication and collaboration to both experts by profession and experts by experience in attendance. Supporting the development of scientific communication skills for all attendees can help bridge any gaps in understanding and enable all attendees to engage in discussion on an equal footing. Training sessions could be part of the event promotional schedule if there are several months - and the resources available - before the event. Alternatively, training could also be featured in the program as one of the initial event sessions.

Ensure that you organize the event session chairs, moderators, panelists, and presenters to come from a diverse range of people that includes people with lived experience, researchers, and professionals.

The equal representation of the attendees by the speakers and facilitators allows for different perspectives to be highlighted and can create a space where people with lived experience feel empowered to engage in sessions.

Finally, as organizers, it is important to understand the power and responsibility you have in deciding how inclusive and accessible your event will be. It is important to acknowledge how your choices may impact the experience and inclusion of people with lived experience at your event.

Timeline and Timing of Event

After identifying the “why” and “who” for your event, it is important to plan “when” the event will take place, and to develop a timeline for when tasks need to be completed in order to run your event.

Organizers should aim to avoid scheduling events on national holidays or religious and cultural days to accommodate attendees of various backgrounds, and depending on the scale of the event, you may also want to consider avoiding other days and timings that would make it difficult to attend for your audience. For example, events during school holidays or sessions that overlap with school pick-up and drop-off times may make it difficult for people with school-age children to attend.

You should work with your specific community to understand what accessibility and inclusion practices would facilitate their contribution. Many members of the public and people with lived experience engage in research projects as a volunteer and will find it difficult to get time off from their workplace to attend an event. Similarly, researchers may find it difficult to attend sessions outside of working hours.

Another schedule-related accessibility practice is providing breaks that are longer and more frequent than those traditionally allocated for during conferences.

Although scheduling is difficult for any form of event organizing, please take the time to consider what barriers an event’s timing will have on your ability to be inclusive of people with lived experience. Refer to local resources for any specific dates to avoid and review an interfaith events calendar such as this: https://www.interfaith-calendar.org/.

When planning the dates for the event, it is also useful to consider the potential travel times of your attendees. If your event takes place in-person, try to choose a date and start time that takes into account how long your attendees will need to travel. For example, having your event start at 10:30 a.m. allows for inter-city travel the morning of the event.

Creating a Planning Timeline

Your planning timeline will vary greatly based on the scale of your event. We have highlighted areas where your timeline should take into account any considerations that would be specifically supportive of people with lived experience.

Although it is always necessary to allow for appropriate time to source speakers, people with lived experience may require more notice than is traditionally given in order to support their attendance and speak at an event.

People with lived experience may have additional constraints such as medical appointments, caring responsibilities, requirements to plan travel farther in advance, or a job that does not support their participation in research. These attendees will need to know which accessibility practices you will implement before they decide whether or not to attend your event. Barriers like lack of captions or inaccessible conference platform technology can exclude people completely, so it is important to have this information available as early as possible, and to ensure that you have planned for enough time to implement them successfully.

Try to identify potential speakers as early as possible and book dates in their diaries that would allow them to make plans that would support their engagement in the event.

Where possible, arrange a recording of a talk or an alternative session plan that can be used in the event a speaker or facilitator is unable to attend. You can also arrange to have speakers join remotely if it would be more supportive of their engagement.

Case Study

The AI for Multiple Long Term Conditions Conference in April 2023 had a keynote speaker join and give their keynote address remotely in order to best support their involvement. People with the lived experience of multiple long-term conditions may find travelling to events taxing which can have a negative impact on their energy levels and ability to engage in daily activities. By supporting the speaker to speak remotely, they were able to give an engaging and thoughtful keynote address without the burden of having to travel.

Budget

Attending and organizing events can place a large financial strain on all parties involved, and can cause the unintentional exclusion of many people with lived experience who may be engaging in projects as a volunteer.

This section highlights considerations that event organizers can make to increase the inclusion of an event, however, we would like to acknowledge that not all of these recommendations are possible to implement for every event. Please work with your team to prioritize inclusion and accessibility practices that maximize participation and use this section as a starting point for discussion.

Planning an inclusive event requires finding the financial support to remove barriers to full participation. These costs can be considered on two levels: event-wide and individual.

Event-wide costs are things like live captioning and can be accessibility practices that will be implemented regardless of who attends. Examples of individual-level costs are provided in the sections below.

Ticket Pricing

If your event is ticketed, ticket prices should be set thoughtfully and may consider having different tiers of pricing in addition to setting aside low-cost or complimentary tickets for carers and those experiencing financial hardship.

Honorarium and Bursaries

Depending on the size of the budget and structure, creating a policy and the budget for an Accessibility Fund can help to make your event inclusive for all participants. This is a fund that can be applied to cover additional costs encountered by people with lived experience attending and engaging in your event.

These additional costs could be:

• Additional accommodation for people who may need to travel to an event the day prior, or stay longer, if attending in-person.

• Any travel costs or support for those with caring responsibilities to cover the cost of a support worker, childcare, or allowing their child to travel with them.

• Honorarium for members of the public with lived experience to attend sessions. Many members of the public may be volunteering their time or having to take unpaid time off work in order to attend your event. Recognizing their contributions can also help to address power imbalances between career researchers and members of the public.

• Honorariums for speakers, facilitators, and note-takers if they are needed for your event.

• Support for accessibility practices such as a Sign Language Interpreter.

• Reimbursements for accessible transport (for example, taxis can often be more expensive than public transport but may be required depending on the location of your event).

• Provide funds to cover costs of reliable internet access to remote meetings for people in low-bandwith environments.

It is important to create a clear policy for what activities and costs can be covered by an Accessibility Fund.

Honorariums and Reimbursements may have separate policies and timelines, and it is important to be as transparent as possible in order to include people with lived experience engaging in your event. It is advisable to highlight who is responsible for payments, how any reimbursement procedures will work and their expected timeline, and provide clear guidance on what expenses will be covered.

It is also very important to understand how honorarium may affect an individuals’ state benefits. For many countries, receiving an honorarium payment is viewed by government as “income” and could affect future eligibility for benefits. Although you as an events organizer do not need to become an expert in tax and benefits, it is critical to communicate and be flexible about how compensation is provided. For the UK, the Social Care Institute for Excellence has collated a useful overview on supporting people with lived experience at your event who may be on benefits.

Additionally, UK’s National Institute for Health and Care Research has published Guidance on Payment for researchers who need to cost public involvement activities at any stage of the research process that can be used as a reference for developing your event’s honorarium policy.

Please ensure that all documentation and communication about honorarium and reimbursements are written in an Easy Read format following Plain Language guidance and if possible, provide clear pathways on how to submit documents. Many members of the public may not have a printer in their homes and may share a computer or smartphone to take part in events.

Where possible, please be mindful of the technology and process barriers that people may face and make processes as clear as possible. Review your organization’s honorarium policy, and consider what steps will be needed to align your policy with what is both recommended and what is required.

Case Study

Community events run by the Multiple Long Term Conditions Community of Practice are often attended by people with blindness and low vision. These community members receive an honorarium for their participation in focus group sessions and requested a support person to type and guide them through the reimbursement forms. While this example was specific to the needs of that community and may not be a requirement for all types of events, it highlights the additional considerations such as the budget, communication, and the data protection/privacy requirements in order for that would be needed for a member of staff to support attendees with completing the forms.

Personnel

Planning for who will be facilitating and staffing the event will help to identify what inclusion and accessibility practices you can implement to support the participation of people with lived experience.

Consider what sessions your event will be running, and scope out who will be required to do this work. Some examples are:

• facilitators who can moderate and chair conversations or discussion sessions and promote equitable participation

• translators or interpreters for people with lived experience if the event is not hosted in their primary language (this includes sign language interpreters)

• note takers

• specialized staff to your attendees, depending on the event’s topic.

You can also consider setting up a dedicated email address that is active before and during the event for people to direct accessibility questions towards. For example, during the event an attendee with low vision can email and ask for context on content that was shared during a live session.

Large-scale conferences may also consider dedicating a member of staff for each day of the conference who is fully informed onthe best practices for public engagement and will be able to provide assistance and information to attendees with lived experience.

Although not all events will require a full team of support staff, it is useful to consider how organizers will facilitate the inclusion of people with lived experience on the day of the event.

Before the Event (a few weeks before)

Speakers and Moderators

Consider how you will welcome speakers, moderators, and participants and familiarize them, if needed, with the technology your event will use. Many of the technologies used every day by some people have never been used by others, and many technologies are inaccessible to people with sensory disabilities. Consider preparing introductions or tutorials for the technologies used by your event and sharing these with speakers and moderators before the event so they can familiarize themselves with the format, timings, and any technology platforms used at your event. You can also consider hosting a “practice” session with your speakers and moderators before the event to ensure their familiarity and comfort. This may be especially relevant for those with sensory disabilities who would benefit from additional familiarization.

Practice Sessions

An added benefit of having a practice session is to review the material that is planned to be shared at your event. It can be helpful to find any spelling mistakes or formatting issues, or to support speakers in changing phrasing and language that may be exclusionary.

At the Event

Speakers and Moderators

If your event features speakers or presentations from members of the public and people with lived experience, you should consider how you will support them before their sessions. For example, some speakers may benefit from having time to prepare in a “Green Room” or quiet room.

Having a quiet and private room can be especially beneficial for for people with lived experience who may prefer to take medication in private, or may be newer to public speaking.

Consider how you will prepare your speakers to hold a successful session. For example, hosting a practice session or walk through of the technology and venue for them before attendees arrive, identifying some questions or topics they may want to avoid and helping to facilitate discussion, or by asking how they wish to be introduced to the attendees.

If your event overlaps with a meal time, consider whether participants’ ability to eat or take a break will be impacted. If your event is in-person, try to communicate with catering and ensure that there is a meal or alternative food is sourced and held aside for them.

Technology

Depending on your event and platform, it may be helpful to organize “backup” technology on the day of the event. For example, provide accessible electronic copies and printouts instead of relying solely on online technology to communicate important information. Many people do not carry around a smartphone or laptop and may have not used streaming or presentation software before so try to ensure that there are both “online” and “offline” copies of important documents.

By recognizing that technology can create barriers for many people and preparing appropriately, you can work to ensure anyone who is interacting with this technology feels more comfortable using it on the day.

Personnel

At the event, it is important to have clear communication and identification of staff and organizers especially if their roles are to support attendees.

You may want to consider having an accessible document, website page, or paper copy introducing the event organizers and facilitators so that it is clear who to ask for help. You may want to highlight people who are able to help if an attendee has a question about the sessions, as these people may be different from session facilitators and technology support staff. By including contact details and explaining the roles of organizers, it can help attendees feel understood and welcomed instead of being redirected to multiple people who are unable to help them.

It can also be helpful to have a dedicated person who can be easily located and contacted during the event and will be able to take action if there is a problem.

This may not be feasible for all events and may be more important for in-person events, but it is important to consider how to make the event accessible and inclusive throughout. Inclusion can be planned for, but it also needs implementation and support to make it happen.

After the Event

Consider if you are able to make content from the event accessible to attendees, or open to a wider audience, after the event.

For events that have recorded sessions, this may be uploading the content to YouTube and ensuring that the captions have been reviewed and added to any video content. Platforms such as YouTube may be more well known and able to be used comfortably by members of the public as opposed to systems such as Canvas, Microsoft Sharepoint, or other academic content sites. When choosing where to host and share your event’s content, consider how easily findable it will be for your audience.

If your event included content such as slides or documented notes, consider where and how you will archive them so that they can be accessed and referenced by attendees. Online repositories such as Zenodo are commonly used by research communities but are not universally design-compliant and require both technical expertise and knowledge of how to use and access it as well as requiring an internet connection to access content. Consider using Zenodo in addition to an accessible format. This could be a website commonly visited by your attendees, sending post-event summary information to attendees, or providing recordings of sessions that display session content.

You can help future conference organisers by keeping track of the inclusion and accessibility practices you implemented, how successful they were, and what resources were required. This will provide an outline and timeline for your next event that is specialized for your topic and people with lived experience.