Patient involvement in setting research priorities makes sure research addresses what is important to patients. For example, it involves the people that will hopefully benefit from the research. It is important that the person is reflected in research and not just the patient with a certain condition. For example, their ability to participate in life. In research with consumers, we have found that fatigue, economic impacts and education are all important yet rarely addressed.
Some other examples of research priority setting partnerships in CKD include:
- Aetiology
- Diagnosis
- Primary and secondary prevention
- Progression of the disease
- Management and treatment
- Causes and treatment of symptoms (sleep, fatigue, depression and anxiety, sexual dysfunction)
- Prognosis
- Complications
- Health services
- Alternative treatment
- Diet
- Exercise and lifestyle
- Psychological matters and knowledge
- Economic considerations and education
How do we set priorities?
Frameworks help guide the priority setting process. For example, the James Lind Alliance and REPRISE.
The UK James Lind Alliance (JLA) framework guides researchers to work with consumers to form the research agenda. This means Which means we want to know by all the people involved what they think we should research. The JLA process consists of eight steps:
1. Form a steering group to lead the priority setting partnership.
2. Collect research uncertainties by a survey.
3. Categorise the responses into a long list (approximately 40-70).
4. Create a short list (approximately 20-30). Look at the most important ones first.
5. Hold a priority setting workshop to determine the top ten priorities.
6. Publish both top ten and short list priorities.
7. Work with funders and researchers to make an impact.
8. Constantly check and evaluate the impact of the priorities and priority setting.
You can find out more about JLA here.
It identifies areas that patients and health professionals believe are valuable to research. This means funding, time and effort can have the greatest influence. Researchers follow REPRISE to make sure this is right.
REPRISE are the reporting guidelines for priority setting of health research. It is a guideline to make sure the research is reliable and truthful.
We can break this down into ten clear areas with 31 reporting items. The ten domains include:
1. Scope and context
2. Governance and team
3. Framework for priority setting
4. Stakeholders or participants
5. Identification and collection of research priorities
6. Prioritisation of research topics/questions
7. Output
8. Evaluation and feedback
9. Implementation
10. Funding and conflict of interest
You can find out more about REPRISE here.