Nobody's going to join in research if your invitations are unappealing and inaccessible

True, your research may be on a vital topic. But participants won't be able to get involved at all if they can't understand what you are asking. Or if they feel like they are not cared about or don't belong.

Making research welcoming is an accessibility and wellbeing issue. Participants need to feel like their contributions matter - and be supported to take part. They can't do that if initial research invitations are lengthy, boring, or poorly designed.

Putting care at the centre of communication

Research Integrity should flow through all we do. And that includes ensuring that research invitations speak to all who could participate.

Get this wrong and the representativeness of any sample and subsequent data quality will be adversely affected. Equally, participants should feel respected and valued - invitations should emphasise how much they matter and how important they are.

Linked to this is researcher wellbeing. A badly designed study, starting with a poor invitation means inevitable struggles to get people to join in; handling potential complaints and criticisms about any shoddy participant letters, consent forms, or other materials; or the pressures that follow inevitable low response rates.

A case example - a research letter to young adults

My eldest son has been sent an invitation via his college to join in a study. It's on an important issue that young adults frequently discuss. So one would expect many volunteers.

However, this appears unlikely. Not because of the topic (vital), or the underlying research (which I've not seen), but the immediate barrier of the way the study has been introduced.

The dreaded pdf attachment

Let's begin with how the research is being shared. Colleges have been asked by a research team to share a pdf letter explaining a study with students. From the outset that will impact on who gets to hear about the research as some colleges will be more open to dissemination than others - and all are busy.

Also, there appears to be no standard message for colleges to use with said research introduction letter. So in my son's case the pdf was simply forwarded as an emails sent to all students and parents. Fair enough from the college's perspective. They're passing on a request from a research team.

But given the sensitive nature of the research, it may come as a shock to those who do open the invitation letter to read about issues that may be directly relevant to their lives. Or amplify ongoing struggles and concerns if support in this area is something a young adult is trying to access. Not all parents are understanding and sympathetic, and may be suspicious about why this information is being requested through research. This may translate to problems at home between young adults and their families. Ethically there's a potential concern here.

Any communications strategy should include not just an information letter inviting participation, but a preceding message briefly informing people about the research and that more will be explained in the letter. And clear instructions on how to share, with a sensitivity about consent, autonomy, and raising wider issues related to the topic of any study.

Young adults don't read emails!

It is good practice to separate out sensitive issues so people can choose when, where and how to access them. Unsolicited emails discussing highly personal or potentially distressing research continue to be an unresolved ethical problem. In this case a brief email followed by a letter would be a more appropriate combination.

However, even with this, email communication is not the preferred choice of teenagers and young adults, who're notorious for not checking or reading messages and unlikely to click on a pdf. That's going to rule out a lot of potential participants simply by a lack of engagement.

This should not be blamed on young adults, it's a research team's responsibility to appreciate how best to engage their audience. But any young adult, parent, or tutor will tell you email is best avoided as a sole form of communication if you want any kind of meaningful response.

Not everyone can open pdfs, and not all pdfs are screenreader friendly. All of these issues need considering if participant information letters are part of your recruitment plan.

Try other formats if you want to welcome people in

What might work better when appealing to young adults? Alternative communication formats across diverse platforms young adults prefer would be a better approach. That may include social media and other approaches.

This is always far more effective if participants are actively involved as co-designers from the outset. Not just in terms of messaging and content, but advising on dissemination strategies.

Participants that are reflective of an overall sample are best placed to advise on what mistakes to avoid and how to locate and involve people during planning, piloting and reflection stages of research.

Returning to the research letter in this case, any young person that does click on it may feel discouraged by four pages of dense text, filled with unnecessary and confusing bullet points that overwhelm lengthy, unappealing descriptions of the research.

Especially when the formatting has failed and bullets blur into other paragraphs (along with footnotes that are no longer in the right place and extraneous detail like the version of the letter being circulated).

Those with language and literacy problems or who are using screen readers will find this impenetrable, frustrating, and potentially upsetting if they want to join in the research but cannot navigate how; or generally struggle when writing shuts them out.

A friendly welcome

If you were sent a message asking you to join in an important study you'd expect it to open with a 'hello' or other greeting. This letter has an official sounding title (including the words 'cohort study' and 'participant information sheet') then, boom! straight in with '1. Introductory Paragraph'. Even if someone has proof read it, it feels like they haven't.

All of us like to feel respected and that researchers care about and for us. This is especially true of young adults who are often ignored, misrepresented and misinterpreted; particularly those from minoritised groups.

A study invitation that feels disrespectful or sloppy won't inspire confidence or motivate people to join in. Where studies are on sensitive issues and greater reassurance is appropriate, poorly set out information letters (or opening pages for online research) could easily cause or increase worries, whether or not a person volunteers.

It continues to trouble me that ethics committees are stringent around what must be included in information letters, but the very basics of accessible design and courteous correspondence are apparently an optional extra. They aren't just crucial to encouraging participation and widening inclusivity, they're also about avoiding unnecessary irritation or offence. All of which are research integrity, culture and ethics issues.

Plain language is best if you want people to join in

In this case example, the letter continues using lots of research terms (that aren't explained), alongside complex information about the research. Adults of all ages (including young adults) are diverse and many will not be able to follow information letters or sheets that are above the national reading level and dominated by academic terminologies.

There is a wide evidence base explaining the importance of the readability of participant and patient information for research with clear instruction on how to do this, so there is no excuse for any university to be circulating unnecessarily complicated research letters.

A way around this would be to have versions available in easy-read, visual, audio or other formats (including other languages) and keeping information as brief as possible. That way people won't simply not read further and the risk of humiliation or worry is reduced. Remembering, too, that it's not just about using these different formats, it's carefully checking and piloting them to ensure they are suitable for your study and can be disseminated effectively without introducing additional burdens of time, energy and labour onto participants, researchers, and other parties.

Participants who're sent an invitation they can't fully comprehend on a sensitive topic may easily misunderstand a letter and fear it's about their own health or welfare or wrongly believe it's an offer of care or other support that is not going to be forthcoming. That may also apply to other recipients (in this case parents, carers and tutors).

What's in the small print?

Clarity is crucial to avoid causing alarm, giving false hope, or misdirecting people. This is also important if a study intends to collect additional and potentially invasive data (or things like blood or tissue samples).

This example study wants to do the former, but that information is placed towards the end of the long letter, with aforementioned formatting problems and dense text containing legal-sounding terminology obscuring what is one of the most important things participants should know.

Which is that the researchers don't just want them to answer personal questions, they may also want to follow participants up over a lengthy period of time and have access to their educational record.

The data isn't necessarily a problem, but how you ask for it is an issue

For researchers, all this information may be extremely important. And for ethics committees, knowing it has been shared transparently is also crucial. But for participants this could be potentially alarming or, equally worryingly, they may miss what they're being asked to do.

Informed is key. Something that is denied if an information letter is poorly compiled which can lead to all kinds of harms later on.

Now, in this research students (participants) can talk to their tutors if they have any questions, but busy tutors who've got no additional information about the research won't be able to explain or answer these.

Where letters of invitation are poorly compiled there's also the issue that third parties who're facilitating research a. won't understand it and b. will be inconvenienced by having to help a study where there isn't a clear communications plan.

A further barrier

More than this, the study in question doesn't provide a four page letter and then a link to sign up. Instead young adults are encouraged to speak to their tutor in order to join in.

This may be a useful check for younger participants, but for adults (including young adults), a third party facilitator on a sensitive study may be an additional barrier for completion.

Why? If you sign up via a tutor, you're effectively admitting to at least being interested in, or more likely affected by the topic of the research. That may feel like a major confidentiality issue for a young person who doesn't want their personal details known by others.

Discussion by the researchers with colleges (the people sharing and amplifying the research) and students (the young adults who'll be participating) could help indicate where going via a tutor may be reassuring, or where it creates more work for staff and more anxieties for students.

It's common in studies like this that staff haven't even been asked and the first they hear about any research is when a student appears asking to be enrolled in it. If other parties are to be included, their support needs (and workload) also need understanding, respecting, and planning for.

Keeping in touch?

While the information letter ends with standard disclaimers and contact information, this too feels out of touch with the audience it's designed to meet. An email, telephone number, and postal address is provided. Alongside details of how many days wait there will be before any reply would be given to participant questions. Presumably all this is required by whoever gave ethical approval as it's often a standard request from committees.

But is it something that would bring in participants? While generalising, young adults don't generally communicate via email (as mentioned), nor by telephone. And they are not going to write and post a letter if they have questions or concerns.

The flow of communication in research is crucial, as is the ability to be asked questions by participants and respond to them. In research I've completed this may be necessary to alleviate any worries, clarify any questions or areas of confusion, and encourage participation while reassuring people their contributions do count. Sometimes even where confidentiality is explained it isn't clear and extra detail is needed, especially for those who may be vulnerable or otherwise at risk but who do want to join in .

All of us can improve this process by reflecting on how we're going to be available to participants while also navigating researcher availability, boundaries and safety (on and offline).

Responsive writing - right from the start

Communities frequently raise concerns they want addressing and researchers are well-placed to attend to these issues. Be that through documenting their prevalence, testing interventions to see what may help, or exploring with people what is happening in their lives. Communities, individuals, policy makers, charities and other organisations, alongside researchers, can then make recommendations for change and action.

None of this is possible if research fails at the very beginning.

Making your research invitation accessible, clear and welcoming isn't just to ensure the maximum amount of data is collected or researchers can publish a paper. It's to guarantee all who are eligible to join can do so and all who volunteer for research are made welcome and are valued. And where research (and researchers) do not cause or worsen any issues impacting on participants and wider communities.

I'm not involved in this case example other than being sent the email from my son's college, but if it was a study I was consulted on I would ensure that participant needs, communication strategies, and a culture of care for participants and researchers and administrative teams were embedded from the outset.

I'd also prioritise:

• active inclusion and co-design with young adults from the start

• checking and piloting EVERYTHING for tone, content, comprehension, readability, and accessible design across different devices that participants might use (e.g. phones, laptops)

• keeping information letters/pages brief

• explaining why and how the research is responding to young adult concerns

• fostering a warm, honest and clear tone

• including a short, standard message to go with any additional communications

• welcome diverse participants via a variety of formats across multiple platforms

• checking third-parties (e.g. tutors were supported and not inconvenienced by the research and they understood the study and their role) OR to link young adults direct to the research

• signposting separately to any legalese, logoed, ethics-mandated stuff (for those interested) by providing a short letter and the rest of the information clearly explained online elsewhere with the option of the same information available in print format, easy read, and other languages (including braille).

Remember, integrity covers our invitations and messaging. And those should always start with ensuring all who qualify are welcome and feel respected and valued.

Addendum

Several weeks after this article was published my Son came home from college to say he'd been assigned the questionnaire from this study to complete during tutor time, along with his tutor group peers.

His tutor had no instruction about consent, explaining the study, or anything else. They had been told to get the students to fill in the questionnaire, so they did.

The questions were personal and included whether students were worried about their peers or tutors seeing their answers, which seemed ironic given everyone could apparently see each others replies in the classroom.

Some of the students are now concerned they've allowed access to their educational records and have no idea why that information was requested. They don't know how to ask for this to be revoked.

All of which reminds us that if we don't have good control over our research, strong ethics, and clear dissemination plans the integrity of our research will be compromised.

The initial approach to gain participants was ineffective, as outlined above. But it became more concerning when participants were effectively pushed to complete a sensitive questionnaire with no clear understanding of why and no consent.