Thursday, 16 November 2017

Finders, Keepers - how to find people for research involvement and keep us interested

These notes are for a #BecandDerek workshop, Finders, Keepers, at Barts for Queen Mary's University London

FINDING PEOPLE - who might want to help enrich research 

Many health researchers have patients or service users. They are well placed to put up a poster or ask people to help. 

One clinician said to us that she sat down and thought about the different places her patients went for tests, checks and appointments and targeted those with leaflets and posters explaining what she wanted and why.

Most GPs have Patient Participation Groups and you will find local contacts - e.g. Camden in London

Many health communities are using Social Media to reach out and show how they are trying to work together. Here is an example for Tower Hamlets

You might want to talk to those who work in the Voluntary Sector. Here is another from Tower Hamlets  and a couple from Camden Voluntary Action and a Volunteer Action Centre 

The closer to the community the more likely you are to find real people. 

However, you may need to look nationally to find the local contacts. You can find a local Healthwatch here.

If you are looking for Self-Help or Support Group search using Self Help UK 


Charities who help with health research can be a good starting point. Many of them work together and you can most most who are leading on patient involvement are part of the Shared Learning Group  Please use the link only to check if a charity is doing something then contact the charity directly as the group doesn't have the resource to deal with individual enquiries.


University College London have produced the  excellent UCL Culture and UCL Partners Guide to working with Voluntary Sector 

East Midlands Academic Health Science Network (AHSN) have an excellent guide Engaging the Seldom Heard 

You may also want to check out the Centre for BME Health, Leicester 


It would be remiss of me not to mention some of my personal favourites in this area.

The wonderful Katie's Team - you can read my earlier post - here.

...and the wonderful Genes and Health East London - previous blog post - here.

And a shout out for @drtomround working in East London who I met again yesterday so you may also want to check out Tower Hamlets CCG

Thank you - @olivia_research @Rohima_Research and @Neeta_Patel1 - always good to work with you.

AS FOR KEEPERS - just watch this space as our participants will be adding their thoughts and advice

Thursday, 9 November 2017

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?

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

  • 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

  • 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...

Wessex AHSN Co-production