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UCL Translational Research Office Blog



Research Communication: Involve patients and carers in the conversation

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

Benefits of communicating your research

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:

  • Talking to patients and their carers will show you the difference your research can make in real-life that will surely increase your motivation and give you resilience for any setbacks
  • Learning first-hand about the experiences of people affected by a health condition and their perspectives on your research helps to make sure it is relevant to their needs, acceptable and designed in the best way
  • Gaining knowledge about new insights may help you to discover challenges and solutions that you may not have considered
  • Increasing public understanding can lead to support to fund your research

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

Why patients want to know about your research & where we look for information

‘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.

Top tips for sharing information about research, clinical studies and new treatments

  1. Make sure the information is easy to understand from the beginning

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

  1. Consider using new formats

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?

  1. Use a variety of communication channels

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

For best results: Involve patients!

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.’

How to get patients’ views on research

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:

  • Reaching out to third sector organisations/charities, such as the Sickle Cell Society. They often have good networks to people that are willing to discuss their health condition; not everybody may feel confident or ready to talk about it. Include some budget for this work in your funding application or contact third sector organisation about becoming a co-applicant to support your research at different stages.
  • Involving patients and their carers from the beginning when working on a funding application until the very end – Our experience can add most value to your work if we can help you to shape it from the beginning and identify elements that benefit most from our input. Discuss your funding application with us, include a budget as payment for our time and to work with key partners to support patient involvement and communication.
  • Feedback is important – Keep us updated about what has changed because of our input or if not, tell us why. We want to learn if our expertise made a difference or why changes aren’t possible. This motivates us and makes our input valued. Be transparent and honest, if there are challenges along the way, let us know so we can understand why work may change or take longer than expected.
  • The end is a beginning – Try and make our involvement last even if your project is ending, pausing or taken over by someone else. Offer to facilitate introductions (with permission) to the new team members. We are interested in following and learning what research leads to or helping with similar projects. Informing participants what their involvement led to down the line is very important.

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.

How can you help patients and the public understand and believe the results of research?

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.

Further reading:

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