People may choose to take part in research for a wide range of reasons:
- You may want to share the knowledge you have gained since the onset of your injury or illness
- You may want to benefit from a new treatment or piece of equipment
- You may want to help other people with a similar condition in the future
What will I get out of it?
- You may be able to try new treatments
- You might benefit from a new medication or treatment that is being trialled
- You may find it helpful to talk to someone else about your experiences
- You may enjoy being able to contribute to the development of future treatment
How will it help others?
- Not everyone who participates will benefit personally. Sometimes being part of a research study will benefit people who have challenges similar to you in the future. In fact, the treatment you have already received has been developed because people in the past have been willing to be involved in research to work out the best ways to treat people with your injury or illness.
- Professionals who work with people with the injury or illness similar to yours will be able to use the results of the research to improve the way they treat people in the future.
When is it research and when is it not?
Research involves collecting and analysing information to answer a specific question. The information may be gathered from participants via interviews, discussion groups, questionnaires or from a test. These tests may be medical tests (e.g. scans or blood tests) or other clinical tests (e.g. neuropsychological tests or walking assessments).
The range of possible research questions is vast! However some common examples include the following:
- What factors influence late outcomes after MTBI
- What is the outcome after Total Joint Arthroplasty
- Does [treatment X] change health outcomes for people with a specific injury or illness?
- How does [treatment X] change health outcomes?
- What is better at changing outcomes – treatment X or treatment Y?
- What are people’s experiences of [their specific injury or illness] and what challenges do they face? How could health services assist with these challenges?
- What are people’s views on health services currently provided? How could these services be improved?
Research is often talked about as being qualitative (stories) or quantitative (numbers) in its design and methods. See HERE for glossary of common research terms.
A clinical trial is a specific type of research studying the effects of specific treatments.
A study protocol will be developed for any research study. A protocol is a document that describes, in detail, the plan for how the study will take place. The protocol explains the purpose and function of the study as well as how to carry it out. A protocol may also be referred to as the ‘study design’.
An audit is used to review how well a programme (e.g., a health service) is meeting its own aims, and the needs of the people who access it. An audit usually only uses information that has already been collected as part of clinical practice, however it will only be used in a way that will not identify specific individuals. Therefore an audit is usually considered to be part of a service improvement evaluation, rather than as research.
Clinical practice will usually involve gathering and studying information about you as a health service consumer/user. This gathering of information is aimed at directly improving your health care. Any information that is gathered as part of clinical practice (and is identifiable as being yours) cannot be used for another purpose unless you give permission for this to occur.
Les Gray refers to himself as one of the “old dogs”. He’s been in chair for 43 years and has seen many changes in policies within the Burwood Spinal Unit and in the way care has been delivered to people with a SCI. Les thinks being involved in research means that he is taking part in the ongoing process of trying to improve the care of people who acquire a SCI since he believes that health professionals and researchers “only learn through shared experiences … that’s where they learn their lessons”. Les also sees being involved in research as give something back for what he has received. “It’s nice to know you’ve given something back”.
As an ‘early adopter’, Les was one of the first people to receive tendon transfer surgery. At that point he said he didn’t care about the risks. Instead he heard the surgery could give tetraplegics greater movement and strength and he “wanted in”. For Les the results were as positive as he had hoped for. “I wouldn’t be living by myself without hand surgery – it’s changed my life”. However Les also talks very positively about the value of ongoing research into the long term benefits of surgery. Upper limb surgery research allowed for the ongoing development of best practice for development of surgical techniques. For instance Les believes that this research programme led to the identification of secondary complications associated with tendon harvest sites. The researcher were also able to determine which techniques were working and holding up better over time. Les talks about how satisfying it has been to be part of this process, and especially in establishing the importance on post-operative rehabilitation in longer term outcomes, which has led to changed practices internationally. “If you don’t research what you are doing, you don’t know how well you are doing, or where you want to go with it”
The other research that Les has been involved with related to aging well with a SCI and explored issues that are becoming apparent as people age with SCI. This work resulted in a recommendation for a National SCI registry, which is currently being implemented.
Being involved in research has allowed Les to remain part of the greater process of learning. “I’m learning about what goes on with myself and my disability, and how it effects my daily living. But others are also learning from it.” He sees great value in health professionals being able to listen and to learn from the experiences of people living with SCI since “we are all on a learning curve together”. Learning to recognise the individual differences – in sensations, movements, abilities – means that health professionals can best “know how to best support people to find their potential and not their limitations”.
Les also believes that research needs to be relevant to the needs of people with SCI. Having people who live with SCI direct and/or provide feedback about the scope of the research is helpful as it allows for the research to remain relevant for people who have a SCI. “Research can become so narrow that it may not help many people. In the planning stage researchers need to ask why am I doing this and what is the research going to achieve in the end?” Les appreciates finding out how the research has benefited others although he also recognises that there has been huge changes in practice over longer term even though it may be difficult to attribute changes to specific research that has been undertaken.