Patient and Public Involvement (PPI) has been a vital part of my PhD. I can’t express how grateful I am for the guidance and support that I have received from public contributors Amanda Roberts and Kate Haneghan-Sykes over the last three years. They have helped to shape my research from study design, recruitment, data collection, data analysis and more recently the writing up stages of my work.
Broadly, I have been exploring the views and experiences of parents/carers of children with eczema around seeking advice and support for eczema online. As the nature of my work focuses on online resources, recruitment and data collection has nearly always been done remotely (via email, through social media sites and online discussion forums). Amanda and Kate are both very active on social media and have been an incredible source of advice. They also live in different locations, and so remote contact has been more convenient.
For me, the big difference between virtual and real-life PPI is the lack of interpersonal communication via computers and mobile phones. I have always preferred meeting with my team in person where possible- physical presence somehow feels more friendly and relaxing to me. Having said that, the virtual approach can be more convenient for some living with certain health conditions, or when under time-pressure. Since the nation has recently settled into lockdown with the outbreak of Covid-19, I would like to share some tips that could be helpful to others who are new to working from home with PPI, or would generally like some new ideas:
Have open conversations from the outset about
- how much time they’re able to commit
- access needs (e.g. visual impairment, deafness, dyslexia)
- payment / reimbursement for their time
- are there any particular aspects of the work they are more/ less interest in
New ways of communication
- Find out about your public contributor's preferred mode of communicating and try to adapt to this;some people are happy to read documents on computer or tablet screens but some public contributors may prefer to have long documents summarised or posted to them. Others mainly use their phone for all communication. Offer telephone conversations in case they prefer to feedback in this way.
- Consider helping them access modes of communication most frequently used by the research team (e.g. Video call: Microsoft Teams, Skype, Zoom; Professional accounts on social media: Twitter, Facebook support groups)
- Remember to make notes during meetings! It might feel weird at first trying to get used to the telephone/video call format
- Put your telephone on loud-speaker so it’s easier
- Minimise the video call to half of your computer/laptop/tablet screen and use the other half to type notes
- Audio-record the meetings with consent from the others (e.g. through audio-recording with your phone, Dictaphone, or through some of the video-calling apps such as Microsoft Teams and Zoom)
- Respond in a meaningful way
- You do not have to act on their suggestions, but you can tell them the thinking behind your decisions
Dealing with documents
- You could introduce public contributors to Microsoft Track Changes for them to comment on electronic documents that you have sent to them if appropriate, or otherwise ask if they would like you to send hard copies where possible
- Any work that you send them, provide clear instructions on the documents themselves even if you have already mentioned it verbally or elsewhere (e.g. time to respond, who to respond to, who the target audience is)
- Get organised with e-mails i.e. create a designated folder for all correspondence with PPI if you haven’t already
Keep in regular contact! They are a crucial part of the team
Please feel free to get in touch if you’d like to know more (B.M.Treadgold@soton.ac.uk; @BethanTreadgold).