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Involving patients and the public in research online

More and more people are working, learning and socialising online. Digital transformations and technological advancements have changed the way we live, work, and entertain ourselves.

And of course, in 2019, the COVID-19 pandemic forced some people to move their work-life online. This resulted in a bit of a culture shift and people became familiar with working online.

With this, online patient and public involvement activities became more common, and the use of online meeting and collaboration software have supported this alternative way for involving people in research.

Why involve people online?

There are many potential advantages of involving people online.

  1. Wider geographical reach: More people can be reached online via social media, social networks, online noticeboards and emails. Events and meetings need no longer restricted to those people living in any given geographical area.
  2. A more accessible option for some: Online options may be preferred by people who are unable to travel or find it difficult to do so e.g., those who have health conditions or disabilities that make leaving home challenging, and people with work and caring responsibilities.
  3. Less costly: The total cost of online involvement approaches can be much less compared to in-person activities as there are no costs for venues, travel, refreshments, and accommodation.
  4. People feel more comfortable: Some people feel more comfortable contributing to meetings online, often from the comfort of their own homes, rather than at in-person meetings which may be at places they are not familiar with or feel comfortable in e.g., a university, a hospital, the offices of an organisation.
  5. More people can contribute: Face-to-face activities can sometimes be dominated by a few voices. Online activities can provide a space for more people to contribute to the conversations in diverse ways, for example through meeting chat boxes, polls, word clouds, and shared documents. And of course, there is also the option of the mute button!

But online involvement is not without its challenges. Below are some tips to ensure that your online involvement runs as smooth as possible.

Tips for involving people online

  1. Identify the purpose of the activity: Make sure you have defined a reason for the activity and don’t meet up with people if there is no clear purpose.
  2. Use a range of networks to promote the opportunity: The involvement opportunity can be promoted online via social media, patient and public involvement networks, newsletters of relevant charities and community groups, etc. Contact groups and organisations you think may be able to help you. It never hurts to ask!
  3. Be prepared for tech difficulties: Working online means that at some point there will be a technical difficulty. If you are hosting a live online event or activity, it is a good idea to have an IT person on hand to help with any issues. If it is an issue that can’t be easily solved, it’s good to have a backup plan to fall back on. For example, individual phone calls, a teleconference line, or individual email conversations.
  4. Be helpful: Make sure to provide support for those getting involved as there may be people who have never joined an event or activity online or may not know how to use the online tool. It may be helpful to have a pre-meet with those who are unsure how to use the software via phone call, provide a how-to guide, and/or host a practice run.
  5. Keep it simple: Make it easy for people to get involved online. Avoid software that requires people to download it and platforms that have complicated login pages. Hyperlinks that require a single click to access the event, activity or tool are great.
  6. Provide documents in advance: If you need people to read a document or webpage prior to the event or activity, make sure to send it at least a week in advance. This will give people a chance to read and digest the content. Provide paper copies, or at least downloadable versions, of the document if people want it.
  7. Keep people’s data safe: Make sure that you are using secure online platforms and General Data Protection Regulation (GDPR) compliant software to ensure that any data people provide is securely stored. If the platform you are using keeps and uses people’s data for marketing etc., make people aware of this before they join the online activity.
  8. Find out what is best for who you are involving: Online involvement can unintentionally exclude some people. Not everyone has a computer or is tech savvy, so if they feel uncomfortable in getting involved online you could offer to talk over the phone or meet in person. In any involvement activity, make sure to have individual conversations with the people you want to involve and discuss their needs to help you decide how best to structure the activity.

The key point is that online involvement isn’t second best to face-to-face involvement. It’s just different.

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.