Please ensure Javascript is enabled for purposes of website accessibility
Flat Preloader Icon

Tips on how to make involvement opportunities accessible

In patient and public involvement, people often raise various challenges or barriers to getting involved or getting people involved in health and social care research. Some of which are easy to address, others are not. In patient and public involvement, we aim for genuine and collaborative partnerships between researchers and the public and to involve a diverse range of voices. But this is not always achieved. Why? Well, here are some of the common reasons that we, the staff at the Agora Digital Centre, have come across. Of course, these are only a few of the barriers to involvement – if you search online, you will find some more that aren’t on this list.

  • Inaccessible meetings or events – for example, spaces that don’t cater to people’s access or support needs, locations that can’t be accessed easily by public transport
  • Inadequate payment processes and support – for example, organisations requiring payees to have a bank account, not offering non-monetary forms of payment if money is not suitable, lots of forms, slow payment
  • Inaccessible language – for example, researchers using too many acronyms and technical language
  • Distrust in research or researchers – for example, people may feel that they have been treated poorly by researchers or health professionals in the past

We took to social media and posted a poll with these four options to find out what people thought is the biggest barrier to patient and public involvement. People voted ‘inaccessible meetings or events’ and ‘inaccessible language’ as their biggest barriers (each had 30% of the total votes).

Let’s dive into these two in more detail.

Making your meetings and events accessible

If meetings and events are not accessible, attendees will not be able to participate to the best of their ability or won’t even bother coming at all! The cause of inaccessible meetings or events usually stems from poor planning and/or not involving the public in conversations about planning the event. We’ve got some simple tips for you to consider for your next meeting or event (not an exhaustive list):

  1. Before a meeting or event of any size, be sure you understand the purpose of it. Why are you bringing people together in this way? What do you want to achieve?
  2. Involve patients or public in the planning and delivery of events. Involving patients and the public will ensure that the content is relevant to them.
  3. If hosting an in-person meeting or event, our general rules are to choose a venue that is wheelchair friendly and is in a location that is easy to get to by car and public transport.
  4. Also, when choosing a venue, think about the people who you want to attend the meeting or event. Will they feel comfortable in going to a meeting at an academic institution, a hospital, or local government building? These spaces might be intimidating to some people, and perhaps disliked by some. Ask people where they would feel comfortable. 
  5. If possible, ask attendees whether they have access and support needs in advance. You could ask them directly or add a line to the sign-up page that asks people to get in touch with a member of the team if they do have any requirements (make sure you provide an email address or phone number!). Access and support needs could include having a hearing loop in the room, a private space outside of the room, or bringing along a carer to the meeting/event. Or if hosting online, it might be that someone requires closed captioning or more regular comfort breaks.
  6. Speaking of comfort breaks, make sure you have them.  Our rule of thumb is a break every hour. Longer meetings or events will require more breaks. And make sure that they are long enough to allow someone to go to the bathroom and/or get a drink. This tip applies to both in-person and online meetings. Staff will also benefit from these breaks. Online meeting fatigue is not fun!
  7. If you need people to read something before a meeting, make sure you give people enough time to read it (at least a week). Also ask people if they need a paper-copy. Some people find it difficult to read off screens, so you may need to print and send them the materials.
  8. For online meetings and events, you will also need to think about access to equipment and software. Does everyone have access to a computer or mobile device? If not, can you lend one? Does the meeting software require people to download anything? Try to avoid software that requires attendees to download anything and try to aim for single-click access via a hyperlink.
  9. Also, for online meetings, make sure that there is a dedicated member of staff to offer IT support and that all attendees know to contact this person if they are having any issues.

Use language people understand

The research world is full of inaccessible language – acronyms, technical terms and written for a particular professional audience. Using language that people don’t understand will put them off getting involved. Again, here are a few tips to help you in using clearer and plainer language (not an exhaustive list):

  1. Make sure you use plain language. This means avoid using acronyms, avoid using unnecessary technical language, and avoid using any jargon. Basically, use clear, concise and easy-to-understand language. And try for short sentences. This is not dumbing down. Writing in clear, accessible language is a real skill. If you need to use any technical language, make sure you explain what it means in plain language.
  2. Think about your target audience. What language do they use? What would they understand? If you want to involve people who don’t speak much English, hire translators. If you want to provide materials to people with learning disabilities or people who have difficulty with standard information, you can create Easy Read documents. Easy Read uses easy words, short sentences, and pictures to explain the words. If you’re hosting an event online, also consider whether you will need to hire someone to do closed captioning.
  3. Always ask members of the public how they would like to be described or referred to. Labels such as patients, public, service users, survivors are often used interchangeably. Some people are indifferent, while for others different labels take on a huge significance

Do you want to find out more about patient and public involvement and engagement? 

In our new, upcoming course ‘Nothing about us without us,’ you can learn about what makes good patient and public involvement and engagement in health and social care research. Register your interest for the course via this form or follow us on social media to hear news about the course and its release.