Talking to patients pays dividends

There is a growing acceptance that health research benefits from the experiences and insight of service users. Patient and public involvement (PPI) is also a vital prerequisite for obtaining funding. 

However, it remains unclear how best to do this in critical care research. Surviving critical illness often leaves individuals with physical and psychological challenges that make engagement in research difficult.

Our department recently completed an evaluation of a critical care rehabilitation programme in partnership with the University of East Anglia. We recruited participants from a local support group for survivors of critical illness and had an overwhelming response. Their involvement added significant value, giving context to audit data by providing insight and detail that the numbers simply could not measure. For example, we collected attendance data for the programme, which showed that a large proportion of interviewees were not engaging due to physical restrictions, social isolation and the practicalities of accessing services.

Research suggests PPI helps improve the quality, relevance and impact of projects. In our case, PPI contributed significantly to the findings of the evaluation and gave participants the opportunity to guide improvements in the services they received and so ‘give something back’ to the NHS.

INVOLVE, a national advisory body for PPI, funded by the NIHR, provides comprehensive resource for involving patients and the public in research. HQIP (Healthcare Quality Improvement Partnership) also provides publications, e-learning and resources to facilitate quality improvement. 

Further work is needed to determine the most effective ways of conducting PPI, however, a growing body of evidence is advocating listening to the voices of those at the heart of healthcare when planning studies and projects. 

Tips

• Use a mixture of qualitative and quantitative methods to combine inductive and deductive thinking and reasoning to support findings
• Engage with existing patient groups as a starting point; these individuals may be more open to involvement in research and quality improvement
• Explore experiences with interviews and focus groups to give individuals the chance to share information in their own words. It is also useful for gathering detailed information and understanding social processes.

Cautions: 

Using a mixture of methods can be time consuming and may require additional resources to collect a variety of data PPI should not place undue burdens on the individual taking part; use guidelines and national bodies for support, seek ethical approval where required and engage the help of your local research and development department.

• Suzahn Wilson is a respiratory physiotherapist at West Suffolk NHS Trust