Friday, 23 May 2014

Challenging the Status Quo

View from my room

I received an invite to speak at a European Masterclass in Cancer Patient Advocacy. I reflected on the history and gave a summary of some of the progress we have made. 

The following notes capture some of my thinking that I spoke about in my talk in Baveno, Italy.

The nature of involving patients, carers and the public is a growing movement. The seeds are fairly firmly planted in policy in England. To continue the metaphor there are many fine flower beds but there are some barren fields so there is much still to do.

One of the significant ways in which this has taken place is the establishment of groups and the promotion of representation on committees.

These groups have helped me and others to get a greater understanding of what research is all about and what is required. It has provided a sense of community and common purpose about improving research. The community has tended to be populated by white, middle class, semi-retired professional people - like myself.

Some of the groups have been state supported, funded by government bodies and assisted by managers and other staff. The way these groups function often mirror the administration of the organisations. Too often they are encombered with unnecessary levels of bureaucracy with extensive minutes and papers. 

These groups have made an important and valuable contribution impacting on policy and practice of research. There is certainly a place for groups to continue to be encouraged and helped progress. There is also a time to let go and encourage self sustainability.

The challenge for us all is how to reach out to others, to enable and empower individuals as well as communities of either interest or locality.

Do people need to become embroiled in committees and groups to be able to make a difference? 

I have selected some key themes (in CAPITALS) to explore some of the concepts that need wider discussion if we are to make best use of any resources especially in a time of austerity. I want to see active involvement at all levels of research but we have to consider what makes the best added value.

Is it better to have groups funded INSIDE the organisational structures of research or do groups on the OUTSIDE have the potential to be more effective?

Should we promote greater ADVOCACY, the speaking up and out about what we want from research rather than merely accepting REPRESENTATION at the tables?

How can we report the still too frequent examples of TOKENISM and show LEADERSHIP to address to address this poor behaviour?

How might we promote more INDEPENDENT groups rather than have a DEPENDENT style of involvement?

What actions need to be taken to develop a greater DIVERSITY and move beyond the ALIKE?

How do we remain CHALLENGING and avoid ASSIMILATION into the mores of a committee or board?

What should be doing to enable and empower INDIVIDUALS and communities rather than rely on specific GROUPS?

I have no immediate answers to these questions but do feel they should be discussed. 

The most important issue here is that we, as patient advocates, are scrupulously honest and clear about any specific interest with industry, charities and government departments. 

But where do we have this dialogue???

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 

Thursday, 1 May 2014

What questions about evidence and research might help those who commission services?

These days I find that as I go to meetings or take part in telephone calls that I get asked questions or to give my opinion on certain issues. I am using these opportunities to put pen to paper, help clarify my thoughts and make statements that lead to improving research.

Today, I was asked what I would say and ask Area Commissioning Teams and Clinical Commissioning Groups that might make a significant difference to achieving the best evidenced based care, treatment and services in health and social care. So, here is my initial list...

Questions about evidence and research to help those who commission services.

1. How are you working with your Local Clinical Research Network to find out what studies and trials are available for your patients? 
Notes: There will be opportunities to engage and join the Partnership Group which brings local bodies together. You could also ask them what they are doing to engage and involve you?

2. What contact have you had with the Collaborations for Leadership in Applied Health Research and Care (CLAHRC) who are tasked with looking for evidence that will make a difference to NHS care and treatment?

Note: You might like to ask how the CLAHRC and the Academic Heath Science Network (AHSN) is working with patient groups and local communities to ensure that patients experiences are helping prioritise issues that need researched? You could ask your Clinical Senate how they are helping to raise awareness and promoting research across the NHS in your area?

3. What are you doing to engage and involve your local GP Patient Partnership Groups in helping address evidence based care? 

Note: You could ask some of your research active clinicians to write articles for the National Association for Patient Participation (NAPP). 

4. How many of your General Practices, Clinics and Care Homes are active in getting people to participate in clinical research and other well designed studies?

Note: There is a growing correlation between research active practice and better health outcomes. You might help bring together people interested in best evidenced based care, including patients and carers, to discuss how to raise awareness and improve access to trials and studies.

5. How could an informed and knowledgeable patient community help you achieve the changes you require to help evidenced based commissioning of services become a reality?
Note: You could use some of these activities to help people understand commissioning. Building Research Partnerships provides an introduction to research - The Critical Skills Appraisal Programme (CASP) develops their ability to contribute.

6. How could patient communities help you inform the public about research opportunities?
What essential skill do you think people might need to help you?
Note: You could get involved with the "Ok to Ask" campaign which is raising the profile of research as an integral part of the patient pathway.

And, almost finally...

7. How does evidence, based on high quality research, help inform and shape your commissioning decisions?

8. How many of your commissioning decisions have been based on evidence that has been through systematic review?

So, what questions would you ask and what advice would you offer?