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By Alina Shrourou, on 16 June 2022
Top tips to communicate research to people living or caring for someone with a health condition. From early lab-based research all the way to new treatments and service improvements, you will gain valuable insights that benefit you, your research and ultimately patients and their carers.
Authors: Nordia Willis1, Iyamide Thomas2, Edwin Carr3 and Linda von Nerée3
This blog is written for researchers from the patient perspective. It is based on a recent conversation between clinicians, lab-based researchers, the Sickle Cell Society and people affected by sickle cell disorder that clearly showed the need for better communication and the importance of including views of patients early on in health care research. While we specifically look at research into sickle cell disorder, other patient groups may share similar views, and our perspectives are a helpful starting point.
Image description: Normal and sickled red blood cells. Image credit: Canva
People living with a health condition are the ones your biomedical research aims to benefit. Involving patients and carers in the conversation about your research has the following benefits:
Looking specifically at sickle cell disorder, people living with this condition often feel forgotten when it comes to research as there are few treatment options. Communication about your research with people living with sickle cell disorder or another health condition gives hope and develops trust. Research at its best is both: the practical research and communication with the patient audience.
“We strive to be seen as people not just a diagnosis and as patients we appreciate all that you do”.
Image description: Online meeting to discuss different perspectives. Image credit: Canva
‘Hearing about new treatments in development for sickle cell disorder gives me hope for myself and people living with it in future.’
We, living or caring and advocating for people with a health condition, have a keen interest in learning about research on potential future treatments in development. Currently, there are few treatment options for sickle cell disorder despite it being one of the most common inherited disorders and lots of people living with it in the UK. Despite the feeling that sickle cell disorder has been neglected for too long, we as patients and their carers are excited to see hope on the horizon with the development of new drugs and treatments.
Hearing about research empowers us, helps us to trust and to support research that is much needed for ourselves, our children, family members and others that will go through similar experiences in future. We can share our knowledge about new treatments in communities and help to address health inequalities for example to increase participation in studies.
‘As a parent of a child with sickle cell disorder who has a background in science, I constantly read scientific journals to keep up with the latest treatment options for sickle cell, and I know other parents do as well.’ – Toyin, Caring for a child with sickle cell disorder
However, you may not be surprised that it is hard for many to read scientific publications. Easy-to-understand information about drugs in development, ongoing studies, new treatments and improvements to services are a rare find.
‘Research in the US is easier to find, we need to highlight UK research too.’
Imagine the difference you can make with easy-to-understand research summaries, patient information leaflets and conversations avoiding jargon that open research to work across different fields including conversations patients, their carers and families. This indeed can lead to better understanding about the importance of research for future treatments, it can build transparency and trust between medical research and our wider society.
Move away from the language in academic papers and write to us in plain English, avoid jargon (a real danger of losing your audience just there!) and use active language.
‘I am co-author on a research paper that everyone can understand, and I would recommend it as a best practice. Patient partners helped writing the paper. We broke down information, advised on the approach and pointed out jargon that needed an explanation.’ – Nordia Willis
Think about alternatives to a written summary, which can be more engaging and easily accessible. Can you tell us about your study or finding in a podcast or a video linking to further information about the scientific background or findings starting with an easy-to-understand summary?
Spread your information far and wide as this gives you the best chances to reach people. For research on sickle cell disorder include local sickle cell groups, national sickle cell charities, speciality staff such as nurse specialists and support groups in hospitals as well as social media channels including Facebook or twitter.
‘If I want to find out about research, clinical studies and new treatments, my first point of call would be the Sickle Cell Society. I keep an eye on the news too, search on google and get updates from the psychologist in the hospital’s medical team for sickle cell patients. He recently told me about a study using a smart watch to better monitor my condition. I chatted with a friend wearing this watch, and it even looked nice. I considered signing up for it too.’ – Nordia Willis
Image description: Conversation between patient and health care professional/researcher. Image credit: Canva
Your research is fascinating and ultimately aims to benefit real people. Naturally we, as patients, their carers and advocates, are curious to know more, and we can help to explain what the research is about and comment on a suitable format, language or highlight any words that we don’t understand. This can be a starting point for working together and there is more to gain from involving us in research from planning, undertaking and publishing it.
In fact, we think it is crucial to involve us right from the beginning when first planning your research because this gives you the greatest benefit that can translate into getting funding to tackle a health problem in the best possible way for patients.
Nordia’s journey getting involved in research:
‘I got involved in research in my late teens, stepping in for a friend who couldn’t make it. It was a celebration of nurses specialised in sickle cell disorder. During the event I met a professor, who is passionate about research into sickle cell disorder. I worked with him sharing my experience living with sickle cell for pioneering research and the issues I face in our society. After this, I spoke at an All-Party Parliamentary consultation, I started my own peer-to-peer support, and I became co-author of a scientific publication about the collaborative research project ‘This Sickle Cell Life’. I call this a best practice of involving us from the beginning to end including a publication that is a research paper, which you can understand.’
In our view, working with patients and carers as partners is an active part of medical research. We bring the lived experience, and you have the technical and medical knowledge. Keep an open line of communication and liaise with us about your work.
Some considerations for successful partnership working include:
The collaborative research project ‘This Sickle Cell Life’ is a best practice example for partnership working between researchers and young people living with sickle cell disorder:
‘We were involved from the beginning to the end at every step of the journey and kept in the loop about challenges in-between. We had discussions about issues in the transition of young people into adult care and we worked together for the benefit of the project. We co-wrote a scientific publication about findings and shared it with our communities and contacts when it came out. I enjoyed working on the draft pointing out elements that needed change and being asked thoughts about the title and how we wanted to be acknowledged.’ – Nordia Willis
Did you know? Patients feel strongly about needing more research to improve health care for people living with sickle cell disorder in the UK and worldwide. Please do consider developing treatment options that can be applied beyond developed countries. We care a lot about family members, friends and communities in Africa, the Caribbean and other countries where many people live with sickle cell disorder without access to treatments.
Involve us, be transparent and honest about your research. Don’t only highlight the good but also communicate the challenges. This will help us to develop trust and to understand why research takes time and why it can be challenging to find new and better treatments.
‘Involve us in the journey from the very start to the end and in between!’
Make use of our expertise to help you in your pursuit to improve health care through research. We can help you to communicate your research and highlight important considerations that you may not have thought of.
‘Treat our time and advice as precious!’
As much as we like to give time for research, we too have busy lives to manage. It is important that you communicate back to us what changed or if not, why, because of our input. This makes our contribution feel valued.
We have made great strides in the research and the treatment of sickle cell disorder recently. However, to ensure better success and a more effective management, patient and carers should remain key participants and contributors in the conversation.
To sum up: Patients and their carers wish to hear about your valued and important research. Together, we want to ensure successful new and better treatments, so please take the step to reach out and communicate your research projects to patients, their carers and family members. In collaboration, we generate better overall research, promotion of your work and ultimately gain with results.
This blog post follows a conversation from September 2021 hosted by the Sickle Cell Society and the NIHR Blood and Transplant Research Unit at UCL about experiences living with sickle cell disorder, ongoing research and Patient and Public Involvement in health care research.
‘The session was very informative and such a positive experience. It was empowering to get information and share knowledge.’ – Toyin, Caring for a child with Sickle Cell
‘I learned so much from this audience and the conversations we had. What’s important to them as a patient and how they perceive research on their disease. This illustrates the value of engaging with patient groups.’ – Prof. Ashley Toye, Director of the NIHR Blood and Transplant Research Unit in Red Blood Cell Products, Professor of Cell Biology and NHSBT Principal Investigator
For questions, please contact: Linda von Nerée, Patient and Public Involvement and Engagement Lead, NIHR Blood and Transplant Research Unit in Stem Cells and Immunotherapies at UCL via email to l.vonneree@ucl.ac.uk
Authors details:
1 Sickle Cell Advocate and Clinical Genetics Service Manager at London NHS Trust
2NHS Engagement Lead, Sickle Cell Society
3 Patient and Public Involvement and Engagement, NIHR Blood and Transplant Research Unit in Stem Cells and Immunotherapies at UCL
Acknowledgement: Many thanks to Toyin for her contribution to this blog post.
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