5 important ways PPI has shaped our study

1. Clearer language around long lies 

The term “long lie” isn’t widely understood. PPI members helped us refine how we describe these events using respectful, clear, and inclusive language like:

“Being on the floor for an extended time after a fall”

We co-created a word cloud from suggestions and ran a survey to choose preferred terms. This helped us find language that’s meaningful, avoids blame, and respects dignity.

2. Using meaningful measures and outcomes 

There’s no standard definition for a “long lie.” With the PPI group, we explored:

• When a long lie starts and ends. For example, does it start from is it when someone falls? when someone is found? or when help arrives? A consensus formed around recording a minimum duration from call to ambulance arrival but recognising that some patients can’t call for help and may be on the floor for longer.

• How factors like environment, vulnerability, and help response time affect outcomes

• Four key types of outcomes:

• Immediate medical issues (e.g., hypothermia, shock)

• Physical complications (e.g., infections, muscle damage)

• Psychological & social effects (e.g., fear, isolation)

• Impact on carers (e.g., emotional and practical challenges)

These discussions with the PPI group helped to shape the study outcomes and data measures.

3. Site selection and inclusion 

PPI members noticed East Yorkshire wasn’t represented in our initial hospital data, despite being a large rural and coastal area. Thanks to their input we investigated the inclusion of East Yorkshire in our data and we committed to ensuring better regional representation in interviews and surveys.  

4. Improving recruitment and consent processes and documents 

PPI members co-developed:

• Consent and recruitment materials for interviews

• Clearer participant information for those involved in data linking

• Improved interview topic guides

We used Google Docs to collaborate in real-time, making materials more accessible and understandable.

5. Patient privacy, ethics and transparency

At our January meeting, we discussed key ethical and study design issues. PPI raised critical questions about how personal data is used, how anonymity is protected and whether the study information clearly explains these issues. As a result, we reviewed all the participant documentation with PPI input and ensured that our data processes were communicated clearly and transparently.  A PPI member attended the NHS ethics committee meeting to provide lived experience input.