Thursday 15 May 2014

Having more research opportunities available for patients - the role of a Clinical Research Network

Next week sees the celebratory day of a continuing effort to raise awareness about clinical research in the NHS. Ok to Ask is an all year effort to get the public talking about research. If you are doing anything let us know on Facebook

On Monday 12th May, I facilitated an event on Advanced Care Planning for the South East Coast Clinical Senate. I also visited Kent, Surrey and Sussex CRN. Research repeatedly shows that people want to die at home but despite all the evidence the reality is that people 

One presentation by Prof Sube Banerjee clearly showed that when we involve people in thinking about and planning for their care especially at end of life that satisfaction levels about service.

This is Dying Matters week with some excellent reports by the National Council for Palliative Care. They are tweeting with the hashtag #YODO - You Only Die Once. This video is fantastic.

Patients were at the heart of asking for more research into end of life care.

So when we are involved in 'research' it is important to remember to drawing upon existing evidence about what people want and asking what commissioners and others are doing to put best evidenced-based care into practice.

Our role is being 'actively involved' is to ensure that research is closer to the needs of the patient, closer to the experience of real people and to improve care, treatments, services, diagnosis, awareness and prevention.

1. THINK PERSON - what do people who want to take part in research need to participate, get involved and keep in touch? Are the organisations person focussed and driven? Are they working together in a joined up manner? What are YOU doing to bring in people's experience to the table and how are YOU communicating with a diverse range of communities and conditions?

2. PLAN STRATEGICALLY - focus for the Clinical Research Network is the delivery of research studies to people who want to take part. 
  • With Research Design Service, Academic Health Science Networks, the Collaborations for Leadership in Applied Health Research and Care + with NHS to coordinate and avoid duplication
  • We need to consider working together to help people engage with research, be able to take part and to be actively involved.
  • There should be a local Calendar of events, a single point of Contacts and a Newsletter to let the public know what is going on.

3. ACCESS - Websites for a start!
The patient voice can help ask questions about how people are able to access research opportunities...

  • Is research mentioned on the Trust website home page? (From a clear top tab to a side a-z directory)
  • Is there a section about 'taking part in research'? (Explanation about research to the value of participating?
  • Can I find out 'how to take part in specific studies'? (From a clear list of open studies to named contacts)
  • Am I encouraged to get 'actively involved'? (From local initiatives to advice from INVOLVE)
  • Is there any mention of NIHR and working in partnership (From general statements to the LCRN)

I use a simple, highly subjective, RAG rating to give me an indicative score so that I can judge just how public friendly we are to encouraging the public to participate, get involved and keep in touch with research.

We should also ask about equality and diversity in terms of who is being recruited and if all geographical areas of the Network are being covered.

The public can contribute to improving the delivery of studies by considering the actual practicalities as well as feasibility (Thinking about the additional burden of taking part)

There also needs to  Involvement and Engagement - clear statements about how to get involved

4. QUALITY - Almost all service organisations would check with their customers.

  • Experience - We are discussing how we will measure 'patient experience' of the process of taking part in studies. We are keen to find out about the actual journey and whether the person would recommend it to others
  • Involvement - We are developing a survey of how people have got actively involved and whether it has been worthwhile.
  • Learning & Development - We are requesting a report of the numbers of patients, carers and public who have taken part in learning opportunities.

5. AWARENESS - This is a clear responsibility of Clinical Commissioning Groups, General Practices and Hospitals to let people know about research. The Networks can play an important role in influencing and informing these others.

Finally there is a review of Public Involvement in Research - #BreakingBoundaries 

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