Planning Communications for PPIE Events#

Having a good plan on how and when to communicate around your event is always important, but it can be even more relevant when inviting people with lived experience – who might be new to research events – to your own event.

This section provides guidance on what to consider when developing a communications plan for events involving people with lived experience. It will not be able to replace an in-depth communications plan, but instead draws attention to what additional considerations may be needed to help make your event inclusive of people with lived experience. Please refer to the Planning your Event section for more information about planning your event. You can find a checklist at the end of this page for what key pieces of information need to be included in your event’s core communications.

For this chapter, “Communications” refers to the information you share with potential attendees, the timings and schedule on which you communicate it, the channels you will use, and the content and information about the event.

When developing a communications strategy, in addition to identifying the goals for your event, you will need to consider:

  • Who are you trying to reach?

  • Why are you trying to reach them?

  • What information do you need to include?

  • When do your attendees with lived experience need the information?

  • How will you convey the information to them?

  • What forms of communication does your target audience use (social media, email, in-person meetings)?

Depending on the scale and resources for your event, your communications plan may include the development of websites, PDFs, flyers, banners, and social media posts in addition to email and calendar invites.

By carefully planning out what you need to communicate, when, and how you ensure that the information is received and understood, your attendees will be supported in spending their effort and energy taking part in your event.

When to send Core Communications#

The timeline for planning a communications schedule for your event will vary greatly depending on the size and type of event.

When planning an event attended by people with lived experience, please be mindful that many people with lived experience might require information with more notice in order to plan their attendance.

The more advance notice you can give to people, the more flexibility people have to organize and make arrangements, and the more likely they will be to attend your event.

Save the Date#

Consider how early you will be able to send out a “Save the Date” for your event and when you will be able to finalize accessibility information and a reimbursement policy.

For people with lived experience who are attending your event, Save the Dates serve to give the advance notice required for attendees to plan and give notice that they will be attending your event. For example, many professions require at least 2 weeks advance notice to process and approve leave to support a person taking time off work to attend your event, or people with caregiving responsibilities may need to arrange alternative care to support their attendance.

Additionally, many people with lived experience of disabilities or medical conditions need to carefully plan their attendance as part of managing their condition, especially for in-person events. This can be due to medication requirements, and managing conditions that involve fatigue or overstimulation as well as figuring out a plan for how they will manage physical barriers to arriving at an in-person event.

Providing clear and timely information will help your attendees with lived experiences plan their attendance safely, and in a way that supports them engaging fully in your event. This will also be supportive of attendees with busy schedules who may be booked out significantly in advance.

Your “Save the Date” should include an overview of honorarium or reimbursement support, the date, and the approximate location of the event such as Zoom, or the name of the city where the event will take place. It should also reference how long the event is likely to be, for example, if it’s a multi-day event or a few hours.

By providing guidance along with a “Save the Date”, your attendees would have appropriate time to be able to make arrangements, and also be able to make an informed choice about if they are able to attend.

Consider sending out different forms of a “Save the Date” to support how different people use and interact with online calendars. For example, depending on your attendees you may need to:

  • send out an online calendar placeholder,

  • send an email invitation written in plain language with simple formatted headings,

  • attach an accessible PDF flyer with “Save the Date” information to any emails,

  • and promote the “Save the Date” information through your usual communication channels such as Slack, LinkedIn or organization’s newsletter, website, and social media.

This can ensure that people who use different communication channels are able to receive the information in a medium that is accessible to them and through the channel they are most comfortably using.

Case Study

The Public and Patient Involvement and Engagement Community for people with experience of Multiple Long-Term Conditions had asked event organizers to send out both calendar invitations compatible with Outlook and Google calendars, and email invitations.

This was to support the community members who often needed to manage event attendance around medical appointments, as well as support those who had visual impairments and would benefit from digital tools providing reminders.

In several of the group’s community meetings, attendees expressed that they would not regularly check emails and instead would rely on their calendars, however, some members of the community expressed the opposite and did not use digital calendars but would download and print out flyers for their notice boards.

By adjusting communication to include both these requests, organizers were better positioned to engage people with lived experience. They were also more successful in involving underrepresented people in community events.

Communicating Dress Code and Setting Information#

For many attendees, especially those with lived experience, your event may be the first research event they have been invited to. Additionally, the terms “researcher” and “scientist” may carry many stereotypes such as people wearing lab coats, tweed jackets, or formal robes.

It can be helpful to surface tacit information, such as what to wear, in your event information to help all attendees feel comfortable and to dispel any assumptions people may have about what a “scientist” looks like.

Consider communicating if there is an expectation of business, business casual, or other dress code and if your event will host any particular social events that may require a different dress code. For example, closed-toed shoes in a museum, or modest dress for a sacred site.

Also, consider including a short description of what that specific dress code means. You can include examples or reference images if it is particularly important to be dressed a certain way, for example, a research event that may be visited by a Royal Family or other dignitary.

Where possible at your event, support the adoption of a casual dress code. Business or Formal wear can be cost-prohibitive and inaccessible to those with mobility difficulties or sensory processing differences.

Dress Code Differences

What to wear to research events can often differ greatly between fields. For example, some prominent researchers and a Nobel laureate have become known for not wearing shoes and avoiding formal wear at events. By making clear expectations and supporting people with lived experience attending your event, you are also helping make your event more inclusive and welcoming to all attendees in a non-judgemental space.

Using an Event Website#

It can be incredibly helpful to centralize information about your event in both online and offline locations.

Consider if your event will need a website and dedicate a page on your site to information and a point of contact regarding accessibility practices and the steps you are taking to make the event inclusive.

You can also choose an event platform such as Eventbrite, Humanitix, or EventYay to host information about your event. When deciding on what platform to use please review the accessibility of a potential site, and follow any advice as to how you can make your content on their platform accessible. For example, Eventbrite provides accessibility guidance for event pages hosted on their platform.


When reviewing event platforms, please note that many organizations have recently changed their pricing and localization options.

For example, Eventbrite has been updated so that events larger than 25 people will need to pay a fee to host on their platform. You will also need to check if the platform is available and offers support in the region that you expect participants from.

You will need to work with your team to identify the best solution for your event based on the resources you have available.

Website Content#

Depending on your event and where you host online information, you should ensure that the digital home for your event covers this information:

  • How to attend (joining links for online content and location information for in-person events).

  • When and where your event is.

  • What accessibility practices will be implemented for your event.

  • Who the event hosts are and who the session leads will be. This can help attendees know what to expect.

  • Information about what your event is and what is expected from the audience. This includes if your attendees are expected to have background information on a topic and if your event expects active participation from the attendees.

  • The program or agenda for the event including planned start and end times and scheduled breaks.

  • The event’s Code of Conduct and Privacy notice.

  • Documentation or information about the honorarium, reimbursement, or renumeration policy for your event.

  • Information for a point of contact to get in touch with if there are any issues with joining or if attendees want follow-up information about the event.

Consider also providing any content that is on a website in an offline format such as an information booklet or flyer. This can help attendees access important event information without requiring internet access and can also help attendees who prefer to read information offline. HTML and plain text is often the most accessible format, and some PDF software provides several accessibility features such as Adobe Reader which can be accessed or downloaded for free.

Speaker Information#

All speakers need to be identified and invited with plenty of time to plan their presentations.

Speakers should receive information about the format of their talk (for example: panel discussion, slide presentation with narrative, video presentation, workshop), and guidance about what to expect from an audience and event that focuses on academic research. It is important to identify and surface any tacit knowledge and be clear about the expectations both you as an organizer and your attendees may have about a talk or presentation.

Consider providing introductions and supporting speakers to ensure that they are familiar and comfortable with the presentation technology, and are prepared to communicate scientific concepts to a general audience.

Inviting Speakers with Lived Experience#

Representation is incredibly important and you may want to consider how you represent your attendees in your invited speakers and event facilitators.

When inviting a speaker with lived experience to present, consider what barriers exist that would prevent their full participation in the event. For example, you may need to provide details about the event ahead of when the information is scheduled to be sent to researchers or participants who are not speaking. This is to ensure that the speaker can engage without barriers and make an informed decision about participation while leaving enough time for planning and finding alternative speakers.

Ask your speakers what accessibility practices would facilitate their participation, communicate your decisions about accessibility practices, and collaborate with speakers to ensure that they can deliver their session effectively.

Additionally, when inviting a speaker or facilitator with lived experience, consider asking how they wish to be identified in relation to their expertise and experience. For example, many autistic people, and the autistic community as a collective, have expressed a preference for using “Identity-first” language which places the disability first in the description. This is contrasted with “Person-first” language which emphasizes the person before the disability, for example, _Person with epilepsy. People may wish to be referenced as “expert by experience” or by the phrase we have used in this chapter “person with lived experience”. This can be an incredibly person and important distinction for many people so it important that you ask and clarify with your speakers ahead of time. Many people feel strongly about person or identity first language, and it is important to ask that individual about their preference as part of planning their introduction.

You may notice that both person-first and identity-first language has been used in this chapter. How a person chooses to self-identify is entirely a personal decision, and it is the role of organizers and facilitators to support the choices of the speakers and attendees, as long as it does not contravene the event’s Code of Conduct. Consider instead including a statement on the inclusive and compassionate use of both person-first and identity-first language when opening your event.

Speaker Preparation#

Depending on the type of event you are planning, you may want to consider providing guidance for speakers, moderators, and presenters on inclusive communication, and requesting that any content delivered in the session can be sent to attendees before the event.

If your event has online or streamed sessions, consider developing an information pack and working with your speakers and event facilitators to ensure that content is accessible and inclusive of all attendees. You can use this pack to highlight information about the audience that the speaker should know, and provide guidance on how to effectively communicate to an audience of people with lived experience. In this resource, you can model how to talk with respect about the people with the type of lived experience that is the topic of your event, using the vocabulary the community chooses and avoiding assumptions related to that topic. Many early career researchers may not have received formal training in scientific communication and working with the public, so it can be helpful to emphasize the importance of using plain language and speaking clearly.

You can also prepare the speakers by asking how they would like to interact with any questions that are asked. Many research talks often follow a “lecture” format where a speaker talks on a topic and then takes 2-3 questions from the audience. Consider asking your speaker to break their talk into sections to allow for questions at different points in the session, or if your event is a lecture, consider using software to gather questions as the session progresses. This can be helpful for people with lived experience of cognitive or sensory differences.

Who will be attending#

Many people with lived experience and members of the public may experience additional anxiety due to being in an unfamiliar environment where they can often feel like their presence is tokenistic. If you have planned your event well, attendees with lived experience should feel welcomed and able to engage fully in the event.

It can be helpful in your communications to state who will be in attendance. For example “researchers, clinicians, experts by experience, policymakers, and funding bodies”.

Finally, consider including short introductions and background information about the speakers and session facilitators in your event information. Many people with lived experience may feel more comfortable engaging in an event where they know who they are speaking with and it can be a helpful way to build rapport.

Presentation Slides and Event Content#

Although it can be common to prepare presentation slides at the last minute, to be as inclusive as possible, please work with your speakers and presenters to finalize session content before the event.

By working with speakers and requesting slides and presentation content ahead of the event, you will be best set up to support the involvement of people with disabilities and lived experience at your event.

This can help in two core ways:

  1. supporting speaking in developing both psychologically and physically accessible content,

  2. ensuring that your event’s content is accessible to a diverse audience.

Firstly, consider how you will support speakers in developing inclusive material that is pitched to the correct audience, which in this case will be members of the public and people with lived experience. This may mean developing and sharing guidance on session content, or could also be giving feedback on presentation drafts. Ensure that you contact and confirm your speakers with enough notice that allows them to prepare and revise material.

Secondly, it is best practice to send out content before the session or event to ensure that people with sensory impairments, or who may require more time to review and engage with the material, are able to understand and take part.

If this is not possible, please address the reasons why in the opening address of the event and make alternative arrangements. For example, if the information is sensitive and unable to be shared due to Intellectual Property or Privacy reasons.

Finally, if your event is a workshop that requires live input from attendees, ensure that questionnaires or any reference material that will be discussed are sent out at least two days prior to the start of the event.

Collaborative Event Content#

If content such as presentation slides, worksheets, and other materials are able to be shared but were not sent out before the event, consider sending it as soon as possible. For example, during the event which can support people without internet access, or as soon as possible at the conclusion of the event. You can also send out notes or session minutes taken during the event.

Taking collaborative “live” notes can be very divisive based on different audiences. Having a designated notetaker and being able to read and listen can be beneficial to many people who are encountering new material for the first time, or who may be listening to a presentation that is delivered in a different language.

However, being able to engage in an event’s content and simultaneously read notes often requires attendees to have access to a secondary screen or device that can be used for typing, reading, and to view both written and presented material. Many members of the public may not have multiple screens set up in their homes, and they may be attending online events on their phones.

Ensure that if you offer live notetaking at your event that your attendees are able to access both the session content and the notes, and that technology you use is one that your attendees are comfortable using and getting access to. Some examples include:

  • HackMD provides collaborative editing that can be read by screen readers, but these people won’t be able to contribute to editing the document.

  • Google Docs have some accessibility features but screen reader access to editing depends on the user’s operating system.

  • Etherpad offers full support for screen-readers, and cannot host images or hyperlinks Additional guidance on tools for taking collaborative notes can be found in Tools for Collaboration.

This is an example of how important it is to involve people with lived experience in your event planning. By having representatives or by getting feedback from your specific community, you will be able to identify the best way to share notes and other materials with your audience. It is preferable to ask more than one advisor, as the solutions used by individuals, as well as their level of experience with technology, can vary significantly.

Avoiding Jargon#

Research fields can often rely on acronyms and jargon to communicate effectively between colleagues. However, the use of jargon can make the involvement and inclusion of people with lived experience difficult.

Reflect on how, and where, your research field uses jargon that might not be understandable to the general public. Although you may be able to assume that many people with lived experience are familiar with any common acronyms or jargon used, it can benefit the inclusion of all attendees and experience levels if the amount of jargon used can be minimized. For example, researchers, clinicians and people with a lived experience of arthritis may be more familiar with terms and medication names related to arthritis and associated conditions. However, many attendees may be unfamiliar with these terms can can feel excluded from conversation and event content that uses them.

As part of planning, consider how you can reduce the use of jargon and acronyms at your event, and create a strategy for encouraging speakers and facilitators to also avoid unnecessary jargon.

You may want to develop a Glossary of Terms that can be included in information booklets, and where possible, work with researchers to be mindful of, and review, language choices to ensure inclusivity, such as avoiding gender-specific terms and including language that recognizes the diverse identities engaged in your event.

You can find online examples of Glossaries developed by research funding bodies, or review the NHS list of jargon and acronyms for inspiration.

Using Plain Language#

Similar to avoiding jargon, ensure that your core communications are written using Plain Language or are in an “easy reading” format.

Plain Language, sometimes referred to as Plain English in the UK and North America, allows for communications and other information to be read and understood easier. Consider how you will encourage attendees and speakers to adopt clear and plain language communication throughout your event.

For example, you could address and encourage the use of Plain Language during the opening address or by signposting it in your event’s shared information. You could also consider an activity where researchers are paired with non-researchers and are asked to explain their research in under 3 minutes. This can help to bring “clear and effective communication” to the forefront of attendee’s minds and set all attendees up to communicate clearly throughout the event.

Using Plain Language is especially important in your registration and event information packs.

If possible, consider co-developing Plain Language and Easy Read content alongside community representatives or person with lived experience. If this is not possible for your event, you can review guidance on how to write in Plain Language and ensure that core communications and event content are checked by using an external tool.


Aim to have all core event communications be understandable by a general audience, and written in Plain Language. This does not need to mean that your entire event is pitched to a general audience. However, by making all general information understandable you will be more inclusive and more able to engage all potential attendees, from research staff, researchers, organizers, people with lived experience, and other professions associated with your event’s content.

Using Plain Language for your communications can help all attendees understand and engage in your event.

Additionally, consider how you will be mindful of, and review, language choices to ensure inclusivity. For example, avoid gender-specific terms and include language that recognizes diverse identities in your event information and content. This can help acknowledge and respect the cultural differences of your attendees.

Plain Language Summaries#

If your event has a large focus on research content, consider instructing presenters to write Plain Language summaries of core content so that people with lived experience who do not have a background in research are able to engage in the sessions and understand the projects that are discussed.

Please refer to The Turing Way’s chapter on Lay Summaries for more guidance, and you can view good examples of Plain Language summaries from the AI for Multiple Long Term Conditions research projects.

At the Event#

Consider how you will communicate with your attendees throughout the event.

For example, relying solely on emails to send out information about a room change or delay in starting a session will require attendees to have an active internet connection and smart device at all times. Many people may use their phones to join online events and may not have a home computer. Relying solely on email communication would cause these attendees to miss out on core communications if they have joined the event on the hosting platform. Similarly, for in-person events, people may not own a portable smart device capable of checking emails or online content.

There are many different reasons for needing to communicate on the day of the event. For example to make attendants aware if there will be loud noises, content that may trigger photosensitive epilepsy, or to update attendees when your event sessions start after a break.

It is especially important to consider how you will communicate when there will be sensitive or potentially harmful content being shared. “Harmful” can mean a range of things depending on the context. For example, “harmful” content could refer to flickering lights or material that would trigger photosensitive epilepsy, a response to discussion topics that may arise, or a video that could be difficult or uncomfortable for attendees with sensory processing differences to experience. Consider communicating an overview of a session’s content before it begins to allow attendees to prepare or choose to leave the session.

Consider what channels your attendees with lived experience receive information from and try to match those in your event communications. For example, some attendees may need to be called on the phone to receive information, or they may require a text instead of an email.

In many cases, you may need to develop a strategy for how to ensure that all attendees are able to receive event updates, and plan to use multiple different communication streams.

After the event#

Finally, once your event has finished, you may want to consider how you will engage with the attendees.

This may involve sending out thank you’s, a feedback survey, gift packs, or closing event information such as links and slides for presentations, any summary notes, or other material that was delivered and able to be shared from the event.

Depending on the size and format of your event, consider how you will communicate the timeline for when attendees can expect any follow-up information. It may take a significant portion of time to manually transcribe sessions and add captions before uploading to a video hosting platform so it is helpful for attendees to know when to expect follow-up content.

This can be especially important if your event involves people with lived experience giving feedback or input into a project. It can be demoralizing for a person with lived experience to volunteer their time and expertise in a focus group or for a grant application, and then receive no further information. Instead, consider setting a date when you or the research team will send an update, regardless of whether you have completed follow-up materials or whether a proposed project receives funding.


By demonstrating an open channel of communication about accessibility, and by being thorough in your communications plans, you will have a successful event that incorporates the expertise and experience of people with lived experience.

Key Information Checklist#

This is not an exhaustive list of what to include in core communication, however, it can be used as a reference in addition to the information above for what to include on a website or in an information pack.

  • Information about the event including:

    • The Date and Time of the event.

    • Event Agenda or Program.

    • Location of the event. Consider also sharing a map of the location and accompanying text instructions of the location and consider including details such as where parking would be available, where each of the session locations would be, and where to go in an emergency situation.

    • Information about transport links and suggestions for how to get to the location from public transport.

    • Who is hosting the event and a point of contact. Consider including information about the hosts or supporting organizations.

  • Information about any Reimbursement or Honorarium Policies you may have. This includes details on:

    • What can be reimbursed.

    • How to complete the process, as well as links to any forms that are needed. Consider writing a guide or instructions for any forms you may have.

    • What is involved in the process.

    • Who to contact about reimbursements. When working with large research teams, it can become unclear who is responsible for what tasks. Providing details on the reimbursement process, and who to contact if there are questions, can help make people with lived experience who take part in your event feel supported and understood and establish a clear expectation. This is especially important if the member of your event team who is the main point of contact for accessibility questions is different from the person able to process financial requests.

  • Contact information for support or regarding special requests such as:

    • The Event organiser. This may be the designated point of contact in an emergency.

    • A person who is able to provide Accessibility information and help if you are able to support it for your event. Try to make this contact available as soon as you announce the event, even if it is setting up a designated inbox.

    • Any Catering or dietary requirements. Because dietary requirements are protected information, not all members of an organizing team will have access to it or be able to answer questions.

    • Accommodation or transport logistics. This includes a point of contact for any hotels or customer support lines as well as a point of contact who can help secure bookings if needed, or call if there is an issue. For example, a hotel being double booked or not providing step-free access for wheelchair users.

  • Information about the Sickness Policy and what the expectations are. For example:

    • Information about what the policy and procedures are if an attendee tests positive for an illness that affects public health while attending your event.

    • Reimbursement or support available if an attendee is unable to attend (such as ticket reimbursements).

    • Guidance or expectations for attendance in the event of an attendee feeling unwell.

    • Information about community transmission precautions and if any personal protective equipment will be supplied or available at the event (such as masks or hand sanitiser).

  • Emergency Evacuation Plans:

    • Please ensure that information about how, and where to evacuate is provided for attendees to reference in the event of an emergency.

  • Expected Dress Code

    • Include information about what expectations and requirements your event will have regarding dress codes and include a short description of what that specific dress code means.