NIHR CRN CC

Hats off to the National Institute for Health Research (NIHR) Clinical Research Networks who published the latest data on patient experience in research this week. They have now been tracking patient views on participation for three years and with each report we gain a more informed picture of what matters to them. And with the sample now rising to nearly 5000 people, it’s become an extremely credible exercise.

The high positive ratings on overall experience (80+ %) are consistent with every survey I’ve seen in this field. But the report includes a neat synopsis of the recurrent themes in the data about what’s high on the priority list for patients including: motivation; research staff (constantly over-looked in public engagement efforts around health research); time; information; access issues. It will be interesting to see if and how these are highlighted in the PRIORITY Priority Setting Partnership looking at retention issues in trials.

What’s really clever about the report is that the authors – Mana Golsorkhi and Roger Steel – have then taken the findings and translated them into a series of recommendations for how issues might be addressed, charting these against different stages in the research pathway and then which organisations have responsibility for making it happen. In such a way they have shone a light on some of the weaker areas where further work is needed.

They also make some more pointed recommendations for each of the main issues identified above. I was taken with the proposal that each site (hospital, surgery etc). taking part in a clinical trial should carry out an ‘access audit’ which takes into account physical access, parking, time to travel etc. It’s a good idea. But i think it could be widened to a more general audit that is integral to assessing site feasibility.

Personally I would like to see all Clinical Trials Units and trial sites have Standard Operating Procedures (SOP) to cover public involvement and patient experience.

Great report. A good way to end the week.

Today the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC) has published the results of a ‘mystery shopper’ exercise it conducted last year to investigate how well NHS Trusts provide information about clinical research.  You may have seen a piece in last Sunday’s Observer which trailed this work and you may hear about it on your local radio station during today.

The results which can be found here will not surprise you, with most NHS Trusts not providing patients or signposting them appropriately.  The sample is small but, based on my own experience and that of colleagues, I think the findings are likely to be indicative of the picture across the country.  As a first round, this ‘mystery shopper’ exercise has been an innovative exercise and I was delighted to be involved in a small way at its inception.  It sets a benchmark which needs to be regularly tested and I would argue that it would now be interesting to see whether there is any correlation between those Trusts that are high-performing in terms of recruitment to clinical trials and the availability and quality of information.

In some senses the specific results – pity the poor hospital receptionist – are less important than the overall impression being given to patients about whether an NHS organisation is open or closed for doing clinical research.  I used to work with a CEO who used to say that you can tell the culture of an organisation just by walking through its front doors and gauging what he used to call ‘the smell of the place.’  In essence I think that’s what we are talking about today.

What next?  Well, as you will see, the report says that a resource pack will be developed to help NHS Trusts develop their information on research.  Whatever we do it is important that it is supportive and encouraging rather than admonishing.  Life for our NHS staff is hard enough as it is and we need to keep it simple.  I am rapidly coming to the view as I develop my programme on patient access that we need to embed patient champions in every NHS Trust to promote a more conducive culture – a little like embedded reporters in the army.  The NIHR CRN CC Involvement4Access project which I have mentioned several times before begins to take us on that road.    We also need to really support and help our hospital and GP surgery staff to understand why research is important and why it is important patients should feel comfortable asking about it.  It is people who drive culture.

 

 

Recently I decided to ‘Follow’ as many of the NHS organisations (Trusts, CCGs etc) as I could find on Twitter.

The main reason was that as we ratchet up what we do around the patient access to research agenda in the New Year, I thought it would be good to begin to make connections on social media. What I hadn’t quite expected was that being able to see their twitter feeds has provided a fascinating insight into NHS activity. Better still that some would contact me with some brilliant examples of what they are doing in research.

Cumbria Partnership NHS Foundation Trust is one such example. They have a great research page. They also have an excellent YouTube video about the importance of research to the Trust with some excellent messages for patients and NHS staff.

Always happy to post similar examples. And I know Cumbria Partnership are interested to hear how other Trusts are using social media in an NHS context.

Don’t forget that NIHR CRN CC has a project up and running to support NHS Trust link-up and share good practice on partnering patients in improving access to NHS research. The web pages are being constructed as we speak. And yes, I shot this video at home. The occasional wisp of smoke outside the window is from my neighbour’s boiler flue (in case you were wondering).

The National Institute for Health Research (NIHR) CRN CC has today published its clinical research activity report for the final quarter of 2011/12.  Some of the data and a good summary of what they mean is also available on The Guardian website.

Last year was the first that this sort of information was made widely available.  So importantly, from a public perspective, people can now look at how their NHS Trust has improved upon what it did the previous year.

The overall picture is positive.  In addition, there are some very good stories within the report about the progress being made in specific parts of the system.  I am particularly pleased to see the increase in research activity across primary care – a significant foothold that we must make sure is built upon as the NHS changes take effect.

Patient recruitment to research was above the NIHR CRN CC target, if a little lower than last year.  It simply emphasises the fact that we have much to do to ensure patients are given the opportunity to take part in an appropriate trial.  More importantly, that they know they have the right to ask.  I shall say more about this next week.  The fact that the NIHR CRN CC report slices up the data by NHR Trust and type of Trust also means we can be quite strategic in our thinking about where this push is needed most.

Yesterday I chaired the second meeting of a working group – hosted by NIHR CRN CC – that will be bringing together a cluster of public involvement colleagues in NHS Trusts across the country to develop tools and information for Trusts to improve access to research for trials.  You heard it here first.

We are on the right path.

So it was an early start for me today, doing radio interviews for International Clinical Trials Day today.  I’ll post the links to one or two when available.  Here’s the press release from NIHR CRN which was the news peg for the interviews.

NEWS RELEASE TEXT (HEADLINE AS ABOVE)

The results of a new survey, published on International Clinical Trials Day (21 May), have shown that most people are not aware that research is a core part of the work of the NHS.  The survey raises concerns that patients could be missing out on opportunities to take part in potentially beneficial clinical trials as a result.

Research studies are the way that healthcare professionals gather robust evidence about what  works best, in order to improve treatments for patients now and for the future. 

The NHS Constitution states that the NHS will do all it can to ensure that patients are made aware of research opportunities relevant to them.  However, a new survey (conducted by One Poll on behalf of the National Institute for Health Research Clinical Research Network) has found that:

Only 21 per cent of people surveyed were aware that carrying out research is a key activity for the NHS, yet…

82 per cent of people surveyed said it is important for the NHS to offer opportunities to take part in healthcare research

Less than seven per cent of people surveyed said they would never take part in a clinical research study.

These figures on consumer attitudes are in stark contrast to an earlier survey of healthcare professionals, carried out by Health Service Journal magazine last year, again on behalf of the National Institute for Health Research Clinical Research Network.  In this survey, 61 per cent of healthcare respondents said that research was peripheral in their NHS Trust, with only 38 per cent agreeing that research is embedded in planning and performance at board level.

Commenting on the findings, Dr Jonathan Sheffield, chief executive of the National Institute for Health Research Clinical Research Network, said:

“Research is core business for the NHS, so we need to encourage patients to be more demanding of their doctors and NHS institutions when it comes to offering the chance to take part in research activity.  We also need to do everything we can to encourage a research culture at all levels in the NHS. It is high time that NHS Trust boards put research on their radar.”

Whilst the surveys show that more work is required to build the profile of research activity in the NHS, there has been significant progress in recent years.  The National Institute for Health Research Clinical Research Network recruited more than half a million NHS patient volunteers into research studies last year, and this number continues to increase.

The organisation is also sponsoring an award for NHS Trusts who have made the most progress in embracing research at an institutional level.  

Dr Jonathan Sheffield said: “Research is not just an activity for the big teaching hospitals.  We need district hospitals and GP surgeries to rise to the challenge.  Many have already started to do so, but it’s important that it keeps progressing.  With an ageing population, the demands on our health service just continue to grow.  Research is the best way we have to work out the most effective and efficient ways to meet patients needs.  We need to take note of this survey, and keep pushing for research to have the profile it deserves with doctors and their patients.”

 ENDS