Pragmatic, Personal Insight

I was invited to talk with @NIHRCRN_wessex about how we make involving people simpler and more practical.

We have got much better at involving patients and the public at an earlier stage of designing studies. But how might patients, carers and the public get involved with the delivery of that research.

Thinking about how patients might help us with the delivery of research is in everybody’s interest and everyone’s responsibility. Thinking about how we advise, support and empower people is the role of each of us working in patient and public involvement.

Our task is relatively simple: 

We want it to be easier for people to find out about, take part and get involved in research and know that the experience of doing so is valued.

The pragmatic question for us

Where do we need and want patient experience, the patient voice and the presence of patients/the public to make a difference?

Where might that voice best add value to the delivery of research: 

Awareness, Information, Access, Communication, Recruitment and Retention, Feedback.

Our desire is that all participants are thanked for taking part, receive a lay summary of the outcome and are able to access the full results.

So, what roles are there for patients in the delivery of research:

PATIENT EXPERIENCE (as participants)

• How is information being use for quality assurance and improvement?
• What data is already collected (such as Friends and Family) and could research form part of it?
• How might we use technology better to gather such information?

PATIENT/PUBLIC VOICE

• Taking part in Surveys
• Helping review communications materials by email
• Reviewing results of patient experience survey
• Stories for use at meetings

PRESENCE

• Ambassadors - speaking to local groups
• Hearts and minds - talks to staff
• Sounding board - Advice about doubtful studies
• Walk throughs
• Reflecting on less successful studies

Note: The people we want to hear from may be different and have different skills

HOW MIGHT WE DO THIS BETTER?

• Team work in CRN and across NIHR, NHS, Univ and CCGs
• Agreeing certain priorities 
• Start with a clear purpose 
• Share tasks
• Lean on each other but come up with goods
• Adopt a project by project approach with agreed deadlines
• Choose one big project with two or three smaller and medium term tasks
• Set out with Impact in mind - capture, count and circulate
• Leadership - use a partnership model

Our job in Patient, Public Involvement and Engagement is to offer:

• Support to enable patient advocates to improve our work
• Knowledge about Improving Healthcare through Research - the MOOC
• Information about support that is available - Learnzone; PRAI 

Reciprocal Benefits

• Greater knowledge about our illness/condition
• Understanding about current and recent research
• Finding out about how research takes place, the different methods and the time it can take
• Learning about the efforts to improve research through patient involvement
• Realising the way NIHR is transforming the culture and infrastructure
• Helping shape the future including the use of technology to enhance the experience

We have stories to tell that are valuable to patients, public and teams.

Start telling these stories with a passion

Other Sources

You might like to look at these examples of the good work that is going in Wessex...

https://www.nihr.ac.uk/nihr-in-your-area/wessex/patients-and-public.htm

Wessex AHSN Co-production http://wessexahsn.org.uk/projects/143/co-production-working-with-our-patients-and-public

http://wessexhealthlines.nhs.uk/health-lines/researchline/