Ok! I assume you read Part 1 but as a reminder, this is mainly for patients and members of the public who have been asked to help researchers.
Before we start could we just place ourselves in the shoes of the researcher.
They asked you to comment on their work, probably without being too specific. We return the document covered in red pencil marks, underlines, words circled, notes such as “I don’t understand this at all” or a mass of track changes, score-throughs and comments.
How would you feel when you receive this especially if thought that you had really tried to write a ‘lay summary’? You felt that you had explained it in easy steps and avoid medical terms?
I like Praise sandwiches! I learned about them as a teacher working with pupils experiencing problems ay schools. You begin by saying what you like about someone’s work, then point out something that needs improving and end with another positive. They are about leaving people with their self respect.
I always think that the writing of the lay summary and the participant leaflet are the most difficult things we ask the researcher to do.
Sometimes, when I don’t really know the researcher, I test out the ground. I review the document and then I select say the first paragraph for comment. I send it over with my thoughts and offer some possible changes. If the response is favourable then I feel I have permission to be more critical of the rest.
As I said in Part 1, I don’t think my job is to do it for the researcher. Note to researchers – be more precise in asking us to give positive comments, areas for improvement and a limited number of negative responses.
There are a number of sources of good information and tools to help us get it right together…
Top Tips for Researchers – The Academy of Medical Sciences has a great simple advice list.
Readable will quickly test the readability, spelling and grammar of your text and show you how and where to make improvements. You can copy and paste text to show results from a number of different readability calculators and gives average grade level.
Make It Clear campaign is part of the National Institute for Health Research NIHR Involve to ensure that research is understandable.
Easy Read is particularly good in helping make information more accessible for people who find it hard to read standard written leaflets.
I have become far more demanding (in a pleasant way) of researchers who ask for help. I request a telephone call or online meeting. I want to get to know them as a person just as I want them to know me. I ask… What precisely do you want me to look at? What groups of patients have you spoken to already? I then start to thinks about other groups, research communities that might be useful.
Having looked at very specific pages in the Protocol, I then go through the whole document section by section. I am looking for other evidence of the patient – where else might they be contacted, involved and engaged in the study through regular updates, dissemination events, poster writing, on trial management committees, advisory groups, co-applicants, authors, etc.
I am reading and thinking about the ‘recruitment plans’ – are they practical? I look and appraise the costs allocated for involvement. has the NIHR Involve Cost Calculator been used?
PARTICIPANT INFORMATION LEAFLETS
I have deliberately changed the title from ‘PATIENT’ to ‘PARTICIPANT’ in this instance as a reminder that mothers who take part in midwifery research aren’t patients; health volunteers aren’t patients; mental health services users don’t see themselves as patients. If the leaflet says ‘patient’ and I don’t see myself in that way then I might feel excluded.
The vast majority of people who choose to take part in a study do so on a voluntary basis out of sheer altruism – the desire to help others. Many who don’t take part spend hours climbing mountains, doing cycle rides, running marathons, sorting clothes and other belongings for charity shops. All of us pay tax and put money into a charity tin.
The words ‘research subject’ always has invokes a red line. We are human individuals.
When I first started looking at these Participant Information Leaflets (PILs) I used to think that researchers had never studied English. The PILs tended to be one solid block of text with few paragraphs and written almost as a stream of consciousness. The smallest font was chosen to cram in the most information an a blinded RCT was just gobbledegook.
I find myself thinking more about how I feel being given this piece of paper. I am looking more at the structure and layout. I often suggest making it into a trifold leaflet, a pamphlet.
I want to see diagrams, pictures, timelines and illustrations that encourage me to read and ask questions. I want a contact name and address. I am now looking for how those who take part will be informed of the findings in line with the Health Research Authority guidance.
I encourage the use of bullet points, separate boxes, different colours and emphasis. It wasn’t until I came across Professor Peter Knapp at York whose research includes looking at these leaflets that I grew in my critical confidence.
This research on research or trials methodological research is something I now spend a lot of my time. If interested have a look here.
I mentioned the Praise Sandwich earlier as a means to liking, criticism the liking again, as a good way of offering comment on a researchers work.
You might like to suggest that the researcher talks directly with those who are most likely to benefit from the research. You might point them in the direction of self-help and support groups, online social media communities, individuals you have come across. Asking or pointing out any possible effects on specific groups who they may need to talk to.
I have found the following approaches phrases of some use: Have you thought about…; You might like to rephrase this section to make…; You could perhaps think about…; I was wondering whether…; I like the explanation and thought that a diagram might also be used to…; If I understand this you seem to be saying…
I shall leave you to interpret what I was actually thinking when I use these phrases.
One of the missing elements is about the actual difference we have made by adding our tuppence worth to the research. It is essential that we ask for and receive feedback about the IMPACT of our involvement
A NOTE ABOUT OUR RESPONSIBILITIES
Our responsibility in this capacity is simply to engage, contribute and respond within the timelines. We can also refuse the task if we feel unable to complete it. This is the same with joining a discussion group with researchers.
As someone invited to read, comment and review these and other documents, I think that respect is the absolute key. I ask myself what would I think and feel if I received these comments.
I also believe strongly that as I have been invited in to look at these papers, I have a responsibility to ask questions about those whose voices are not being heard. It is about asking the questions about basic health inequalities.
IN OTHER ROLES
There are however some other roles. We might become a member of either a general Patient Advisory Group or one set up for a particular study. We could become a Patient Partner with the Research team in the development of the Protocol and Leaflets and therefore mentioned in the protocol. Some have become co-applicants for the grant funding, co-authors and there is also a strong group of user researchers. The responsibilities increase according to the roles and what is expected of us in these positions.
LEARNING FROM EACH OTHER
Too often, we think about drawing upon our insights to help inform, influence and shape the research. Yet, the reverse also happens – we become informed, influenced and shaped with new knowledge, experiences and skills.
I did not expect to learn so much about research, science and my own health. I did not plan to be involved with some many different aspects of health. I did not consider that I would be writing articles and blogs.
I know that I am much healthier than I was 25 years ago. I learned from research that I should have listed to my parents and eaten more green vegetables and fruit. I maintain a much better lifestyle.
I have found out much more about my cancer and how there is more attention given to the cancer type rather than where it presents n the body. I am encouraged to hear from researchers about lab based science that might improve people’s quality of life after treatment in the future.
I hope you enjoy meeting researchers and hearing about what they do for us. Of course, if we weren’t ill, they wouldn’t have such interesting work to do – thanks!