The days when back pain research was solely done by researchers in white coats, in impressive labs, have long gone. The researchers (some in white coats) and the labs are definitely still around, but nowadays back pain research is much more a collaboration between researchers, clinicians and patients. Read more about how patients, researchers and clinicians can work together in researching back pain.
What is patient involvement?
Research is aimed at finding answers to unanswered questions. Surely we can all think of questions in the area of back pain that still need answering, but how do we decide which ones to prioritise and how to (try to) answer these questions?
The outcomes of back pain research should ultimately bring some kind of benefit to people with back pain. Therefore it makes sense to involve these end-users of the research in the research itself. This makes it much more likely that the research is
- relevant to people’s needs and concerns
- more reliable, and
- more likely to be used.
This is why patient involvement, sometimes referred to as user or public involvement, in research and development projects is so valuable.
Below we have provided more information on what patients and researchers can do to achieve useful patient involvement in research.
What can I do as a researcher?
As a researcher, you may be wondering how can I involve patients in my research project? It is important to realise that there are many ways of ensuring useful patient involvement in research. Different projects need different approaches. Some suggestions:
- Organising a focus group with patients to prioritise research questions
- Including one or more patients in the steering group of a research project
- Asking a patient group for feedback and suggestions on a research plan
- Involving participants of previous research projects in the development of a follow-up project.
There is more than one way of involving patients, but it is important to take patient involvement seriously. It is not just a matter of having a patient in the same room and seeing it as a tick-box exercise, useful patient involvement should be one of the fundamentals of any research project.
To encourage input from patients, and the wider public in your project, it can be useful to think about a few ground rules such as:
- Avoid jargon and technical language as much as possible and provide explanations where jargon cannot be avoided
- ACBVC (this stands for ‘Abbreviations can be very confusing’. Avoid or explain)
- Encourage people to ask questions when things are not clear
- Discuss and agree what everyone is bringing to the project and what is expected from everyone
- Remember that not all patients may be used to speaking in groups or expressing strong opinions. You can provide support by, for example, inviting more than one patient representative or providing extra information and training.
You will see that not only patients and users find these ground rules useful. In the past other team members may have felt too ashamed to ask for clarification in discussions and you often hear a sign of relief when a patient representative asks for clarification!
What can I do as a patient?
As a patient you have a wealth of information and knowledge on what it is like to live with back pain. While many professionals are very knowledgeable, they only see you for a short period of time and they don’t know what it is like to live with back pain 24 hours a day, 7 days a week.
That is why it is so important to include the patient's views when studying back pain or developing new services. As a patient you can bring a unique view to the discussion that can really steer the direction of research projects. And there are various sources where you can get more information and support to enable you to take part in research and development projects.
If you are interested in becoming involved in research, you may want to visit the website from Involve, a national organisation that is dedicated to promoting public involvement in NHS, public health and social care research. They have produced a useful guide (PIP, public information pack) aimed at people who would like to become involved in research, see www.invo.org.uk or contact them on 02380 651088.
You can also join a local patient group in your area. These are often a first point of contact when researchers want to work with patients. Primary Care Trusts have set up Local Involvement Networks (LINks). The NHS Direct website has more information on LINks and their roles, see www.nhsdirect.nhs.uk
Other local groups include BackCare branches and ARMA local networks.
Also keep an eye on BackCare’s website as we may advertise calls for patients to get involved in research.
Useful organisations and resources
BackCare has produced a back pain glossary which can be useful in supporting lay people in obtaining a better understanding of back pain research.
Involve is a national organisation that is dedicated to promoting public involvement in NHS, public health and social care research. They have a range of useful resources for the public and for researchers, see www.invo.org.uk
The National Institute for Health and Clinical Excellence (NICE) has a patient and public involvement unit that ensures that the patients can contribute to the various NICE projects. See www.nice.org.uk
Examples of good practice
LIMBIC
NICE