Home » patient and public involvement
Category Archives: patient and public involvement
Scotland has arguably lagged behind the other three nations of the UK in embedding public involvement in research.
There has undoubtedly been some good work, not least on things like the sharing of patient data issues and clinical trials recruitment (the Scottish Health Research Register SHARE being an innovation of note). But research funders north of the border have not had a shared vision for public involvement and one of the principal reasons why, is a lack of imaginative leadership from the top.
Perhaps that is about to change at last. Step forward the Scottish Chief Scientist, Andrew Morris, and the new draft research strategy for Scotland he published yesterday. This following some months of work as you might expect, including a specific meeting about public involvement held last November which I spoke at.
Chapter 2 sets out their vision and proposals for forming a closer partnership with patients and the public. In terms of strengthening public involvement in the research process CSO (Chief Scientists’ Office) Scotland is proposing:
The group will be renamed the CSO Public Engagement Group (PEG).
- There will be broader representation in the work of CSO, including lay participation at CSO policy and strategic committees
- There will also be greater lay involvement in the planning and review process of CSO investments such as funded units, Bio-repositories and the focus of CSO grants
- The role of lay representation in raising public awareness in the understanding of clinical research will be developed further
In bold type, they also make a firm commitment that: ‘CSO will require the newly restructured NRS Research Networks to show evidence of involvement with the public in their work, and to embed patient and public involvement in their management processes.’
I suspect the headline-grabbing item in the document from a patient and public standpoint is the firm proposal to set up a Clinical Trials Register for patients and the public to find out about open, recruiting clinical studies and express their interest online.
This goes one step further than the UK Clinical Trials Gateway which shows people trial information but, other than giving them contact details for the trial and general information on how to discuss a trial with their doctor, does not aim to support that contact further and never has. They also envision using electronic records to enable GPs to receive alerts on trials that their patients may be benefit from taking part in.
The research strategy is now out for consultation and you have until 30th September to respond.
Hacking in this context is what we call ‘bringing people with different views and skills together to work on problems.’
[Sorry to disappoint the headline chasers but I hope you'll stay with me]
And ‘hackathons’ – events where such hacking activity can take place – are increasingly common across the health arena as a means of solving problems.
In fact Cancer Research UK did a very successful one recently to design a mobile phone game which would help them analyse gene data.
Well, those extremely creative and clever people at the University of Manchester Centre for Primary Care, supported by the Economic and Social Research Council (ESRC) , the NIHR School for Primary Care Research, NOWGEN and others, are applying the principle to health research.
Members of the public are being invited to pitch ideas to a mixed audience of the public and researchers who will then work on turning them into possible research projects.
In the afternoon they will also be turning their minds to patient and public involvement and some of their thoughts will no doubt find their back to the NIHR Strategic Review of Public Involvement: ‘Breaking Boundaries’ announced last week. Did I tell you about that?
The bad news is that the ‘Patient Hack Day’ on 30th April is already full up!
The good news is that this is as simple as it gets as an idea and could easily be adopted and adapted around the country. How about doing one for the ‘Ok to ask’ campaign about clinical research which is running again this year on 20th May?
I had another thought as well.
We now have an excellent methodology in the James Lind Alliance Priority Setting Partnerships (PSPs) for identifying national condition-specific priorities – or rather priorities as defined by patients and clinicians. But as health research becomes more local in its organisation there seems value in thinking of ways and means to enable priority-setting at a local level as well. Both in formal and informal ways. And this ‘Patient Hack Day’ has much to commend it.
Have a good weekend.
The Generation R event – organised and delivered by young people in research – has to be one of the highlights of my year. You can find a write-up from the September event here.
Today the Generation R crew sent me a postcard about what is happening next.
Note the key messages to emerge from the event with respect to the reporting of research results and the involvement of young people in research design and delivery. The latter chimes with this year’s recommendation in the CMO’s report. The former is in tune with the #AllTrials campaign.
Really can’t wait to see what these impressive research champions emerge with in the New Year.
Take part in a live trial now as part of NIHR’s visit to the British Science Festival #NIHRCOMETtrial
I hope you’ll forgive the fact that what follows is the news release but I am part of the team presenting with Jonathan Sheffield at next week’s British Science Festival and I really couldn’t put it better than this. The ‘live trial’ is very exciting indeed and the first dip in the water for a concept that we have been bouncing around for some time which I loosely call either ‘Trialwatch’ or ‘TrialInADay’ – using media and new technology to encourage mass participation in studies to answer serious research questions…….
National Institute for Health Research to make debut at British Science Festival with live trial
This September will see the National Institute for Health Research (NIHR)’s debut show at the British Science Festival and the organisation’s first ever live trial.
The British Science Festival is an annual celebration of science, engineering and technology, with over 250 events, activities, exhibitions and trips taking place over six days from Saturday 7 September to Thursday 12 September. The festival, which is hosted by Newcastle this year, will make a big ‘noise’ for science, technology and engineering regionally, nationally and beyond.
This year’s theme is ‘Making Waves’ and is focusing on discoveries, inventions and research that have made an impact on our lives, and more importantly, what will make an impact in future.
The NIHR’s show called “From bench to bedside: how clinical research is making waves in patient care” will take place on Thursday 12 September from 4-5:30pm at Northern Stage, Stage 2 in Newcastle. The show, hosted by Chief Executive of the NIHR Clinical Research Network Jonathan Sheffield, will include the unique opportunity to take part in a piece of live research called The COMET trial which tests reaction speed.
The event is an interactive and fun show aimed at the general public. Alongside the live trial it also includes audience interaction and a piece of original theatre. The event is free to attend and people can book their place online.
….despite the temptation.
Summer means many things for me. One of them is keeping track of the football transfers. Here’s hoping that the Eagles do manage to persuade Ronaldo to South London!
The comments that managers make about players never cease to amuse me. One of the most common goes something along the lines of: ‘He’s a good lad that Denegri, he just needs an occasional arm around the shoulder.’ During the playing season this is usually before or after they have been sent off for some professional foul.
I have not decided whether it is a professional foul worthy of a yellow or red card. But the perennial resistance of clinicians to take part in the matching of patients to clinical research seems worthy of a caution at least don’t you think? It is disappointing to see it feature yet again in the feedback we have had to the ‘OK to Ask’ campaign that NIHR ran for International Clinical Trials Day (ICTD) in May. You will recall that the aim of the campaign was to highlight to patients that they can and should be asking doctors about opportunities to take part in research.
A summary report on the campaign can be found here. As proof of principle that we can run a co-ordinated campaign about research across both NIHR and the NHS, and in support of a simple message aimed primarily at patients, I am delighted with the outcome. The degree of involvement among NHS Trusts in getting the message across to the public – with over 150 events listed – was very positive indeed. It has also helped promote research awareness among staff within hospitals as the results from our follow-up survey show:
- 77% of people rated the overall campaign as “good” or “excellent”
- 67% of people said that campaign engagement within their Trust was either “good” or “excellent”
- 71% rated how well the campaign was received by patients as either “good” or “excellent”
- 80% said that the OK to ask campaign helped them to deliver some momentum for research awareness within their Trust, Network or organisation
- 98% said they would continue to promote the OK to ask message
But it’s clear from the extensive comments fed back to us (not published as part of the summary by the way) that there was some resistance to the campaign among clinicians. Some were concerned about raising false expectations. Others found it was difficult to signpost people appropriately when some of the tools we have such as the UK Clinical Trials Gateway (UKCTG) don’t yet support local interaction. A few thought the message was demeaning. They probably have not been to Pizza Express either.
It wasn’t a show-stopper – 7 out of 10 people said the campaign was good or excellent from a patient perspective versus 5-6 out of 10 saying the same for clinicians. However, it is something we need to consider as we develop ‘Ok to ask’ over few years; your views and thoughts will be welcome as ever. We will also have a greater opportunity to get it right from a clinician standpoint from this point onwards because we will have a longer lead-in time for the campaign itself. This year we turned it round in about 3 months from beginning to end which makes everything a whole lot more difficult. There will also be opportunities to build on the message at both local and national level in the meantime.
It would also be remiss of us not to recognise the wider context here, the difficulties for staff in the current environment when it comes to research. This was astutely identified by the Association of Medical Research Charities (AMRC) in its recently published vision for the NHS. It’s an excellent document. Part of its vision is that: ‘All NHS staff see the importance of research.’ And it lays out a good plan for ensuring that NHS staff are given the tools, support and opportunities to support the research agenda. Getting behind this call and making it happen is what I mean by putting ‘an arm around the shoulder’ I suppose.
That’s not to say that I do not share the frustration and anger people feel over the stubbornness of our professions in general: when it comes to them engaging with research but also in engaging their patients in research. It featured strongly in the Arthritis Research UK strategy meeting on stratified medicine I attended yesterday for instance. And in that arena it could be a real show-stopper.
But we should take hope from, and use, the fact that many clinicians quite clearly did get on board with the campaign as did the Boards and senior staff of many Trusts. This leadership is essential to changing behaviours.
As is the leadership you and many other patient, public, research and other health professional colleagues showed in making ‘Ok to ask’ a success. For that, I thank you most sincerely.
PS: By the way, it is actually true that I need an arm around the shoulder on occasion! :)
I am involved in this follow-up study to one published a few months ago (and covered on this blog) about the poor information given to patients about the placebo in clinical trials. In the first instance the researchers are looking for people to input into the design of a leaflet. Details and contact email follows:
Have you ever taken part in research before? Would you like to help improve the way research is communicated to patients? Researchers at the University of Southampton are writing a new leaflet to explain placebo-controlled trials to patients and would like some volunteers to help.
We are looking for 10-20 people who have taken part in a clinical trial or other medical research. We will send you a copy of our leaflet and you can either write to us with your comments, email us, or talk to us over the phone. The leaflet is only one-page long, so we do not anticipate it will take you too long to tell us what you think about it. For more information or to volunteer, contact Dr Felicity Bishop on F.L.Bishop@southampton.ac.uk
Healthtalkonline looking for people to talk about their experiences of patient and public involvement
Healthtalkonline is looking for volunteers to be interviewed about their experiences of patient public involvement in research design and delivery. Flyer with contact details below.
Don’t be put off by the fact that I’m speaking at one of these – my fellow speakers are great!
The National Coordinating Centre for Public Engagement has launched registration for a series of specialist workshops targeted at organisations, professionals and members of the public who are passionate about public engagement. These workshops will take place in three venues in Bristol on the morning of 5th December 2012 and will act as a precursor to its national conference which begins later the same day. If you go to the national conference (the previous link takes you to the registration form for this) the cost of attendance at the workshops is included. If you don’t go to the conference then there is an early bird rate fort the workshops of £60 with some free places for ‘community partners.’ The three workshops – which run concurrently so you can only attend one – are:
- MShed – the people’s museum
- Public engagement with health
- Creative partnerships
and full details on each can be found here.
Here’s the blurb for my one which is Public engagement with health:
Public Engagement with Health
Health research is arguably leading the way in public involvement, and much of the culture change in this area has been driven by the funders with some now demanding public involvement in all grant applications. Why are funders in this area taking this stance, and what does it mean for the research and for patients? Is there learning that can be applied to other areas of research, and what can those working in this area learn from others adopting engaged approaches to their research? To what extent has the patient involvement in research led to organisational change and what does the future hold? We will be joined by:
- Simon Denegri, Chair, INVOLVE
- Clare Matterson, Director – Medical Humanities & Engagement at Wellcome Trust
- Sophie Staniszewska, Senior Research Fellow, Patient and Public Involvement and Patient Experiences, University of Warwick
I somehow think I have made this all sound more complicated than it is. Anyway, come!
At the UK Dementia Research event last week, I got chatting to Professor Richard Wade-Martins who is Principal Investigator at The Oxford Parkinson’s Disease Centre. This was in the queue for the cloakroom I should add, and following my witterings during the afternoon panel session.
Richard leads a five year programe of research in Parkinson’s disease at the University of Oxford otherwise known as the ‘Monument Discovery Project.‘ It’s funded by the Monument Trust Discovery Award from Parkinson’s UK – the largest single grant ever given by the charity, and is looking at everything from trying to identify new biomarkers for the condition to the development of new patient-specific stem cell models.
The results of the annual cancer patient experience survey are out today.
For those of us committed to improving patient access to clinical trials and other research, this year’s report is particularly interesting. As far as I know, this is the first year that the survey asked patients whether taking part in research had been discussed with them. You can find the results of these particular questions on p57 of the report linked-to above.
The overall finding is that 33% of cancer patients said that taking part in research had been discussed with them but 67% of patients said it had not. There are considerable variations according to tumour type with urological cancer coming out worst. By Trusts the percentage of patients who were asked about research ranges from 14% to 62%. Whatever way you cut it – by tumour type or geographical area – the majority of people who were asked were glad that the subject had been broached.
In a field which has built a significant reputation for improving patient access to research – thanks to the National Cancer Research Institute (NCRI) and the National Cancer Research Network (NCRN) – these figures show the work still to be done to bring research to the fore of the conversation that cancer patients have with their doctor. I would suspect that other conditions have a steeper hill to climb in comparison.
There is no magic bullet to improving access. The survey highlights the future importance of things like the NHS Choice Framework and the strengthening of patient rights through the NHS constitution in empowering patients to ask the question. But a lot will also rest on ensuring NHS Trusts prioritise the access agend; that they make it their job to raise awareness of their research activity and the importance of patient participation in it.
This week, through NIHR CRN CC, we kicked off a piece of work – Involvement4Access – to bring together patients and support them as leaders within Trusts environment to improve patient access to research. On Wednesday I had the opportunity to attend a Royal College of Paediatrics and Child Health (RCPCH) workshop about research where parents and young people reported very real differences in the willingness of hospitals to advertise research openly on wards, receptions areas etc. The reasons put forward by hospitals for not being more open about research are often misconceived if not plain bunkum.
But improving access will also require patient groups and charities to do more to support the patient voice in lobbying Trusts, health professionals and others to change their approach. There is much in this report and in the recent NIHR league tables of research activity to aid this work. Yet patients need the right tools and information that they and their families can use confidently in order to broker the conversation with their GP or consultant. They also need to hear more from their representative bodies about how they should consider taking part in research as part of their overall treatment.
At the same time, the survey findings about people who were not asked about research on whether they would like to have been, highlights the fact that to participate or not is a ‘personal choice’ which must be respected. 53% of people said they would like to have been, 47% said they would not have liked a discussion. Insight into the patient experience from a research perspective – at what point in their care and treatment should the conversation take place, with whom and how – will increasingly be important. That’s why today’s survey must be repeated but also used as a prompt for further inquiry. It should also be repeated in other disease and conditions areas as well.
At the end of the day, providing better patient access to research is about improving patient choice, leadership, insight and voice.
Actually that’s not quite true because, as is not uncommon with these things, the evidence session I attended today was more of a discussion, and a very good one it was too. But I did more or less cover the following points. At the end we were asked to express one wish about what happens next. I had a two-part wish:
- That the NHS Constitution consultation does not become a referendum but is seen as the beginning of a deliberative exercise with the public and patients.
- That the governance system which emerges enshrines the role of the public as effective co-custodians of good research.
‘Caldicott 2′ speaking notes
The public and health research
Strong public support for health research – ‘instinctive and altruistic goodwill’ towards it – emotive response not too dissimilar to that which causes people to donate to research charities. Nature of a person’s relationship changes as they begin to have direct contact. Value needs to be better articulated, however, and we need to do a better job of harnessing support.
But low awareness and understanding of how it works generally and, even more so, of particular elements such as use of patient data. Clearly need to do more to change this but not sure that ‘the fluoridation of water’ population-wide approach to raising awareness will get us very far. What happens via NHS and Trusts in the context of care much more important – see below.
I suspect people, however, would take issue with the definition of research that some suggest. Would be an expectation of delivery in terms of treatments, new interventions etc not just advancement of scientific knowledge and understanding. Real need to de-jargonise information governance debate and try to arrive at consistent definitions and terminology.
Context for people’s individual participation in research is changing. Now being framed as a ‘choice,’ as an entitlement as part of their care and treatment – NHS Commissioning Board Draft Mandate. Vision of ‘citizen-driven’ research where people are asserting this right with their doctor.
Changes dynamic. People will have greater expectations over their rights as well as responsibilities and I am not sure we have thought this through sufficiently within the research community. It’s no longer a simple exchange or gift relationship. Support is not unconditional.
Strong case for patients and researchers to begin to ‘codify the expectations’ that people can have about their participation and involvement including how their data is used. Public meetings I have done recently suggests growing frustration over things like consent and the lack of a relationship feel to their interaction. Something I am looking at in my role at NIHR.
Building on the evidence
Have been involved with a number of exercises to gather public opinion an insight into public perspectives on information governance – ‘Your medical records saves lives,’ Academy/AMS report.
Evidence is indicative of public support for sharing data and understanding of benefits but important we don’t overwork or overcook it as if it is a ‘mandate for change’ in itself. It merely gives us license to examine further with them how policy and practice could change. That is why NHS Constitution consultation so very important.
4 small points about the ‘Your medical records..’ exercise. First, people assumed their records were being shared anyway. Second, it was a deliberative exercise which enabled people to have their concerns explained away. Third, the biggest barrier to change seemed to be their GP. Fourth, in designing the leaflet people really put a premium on simple, direct information but with clear signposts of where to find out more according to their interests and needs.
Welcome the consultation. Need to take a deliberative approach to it. Important to have right mechanisms to hear and understand what people are saying, not just organisations. Also important that we involve the public in the design of the consultation, the framing of its questions and the evaluation of the responses.
Building trust – consent, research governance and public involvement
Three key elements:
Important for people to feel in control of their information and its uses. So, absolutely critical that people are clear about what is being proposed, the pros and cons of opting out, what this means in practice, how data use is going to be monitored etc. In the Facebook era it seems unwise to have a system which does not allow people to choose areas of information they are happy to share, review their decision at appropriate points and re-boot their involvement etc. Or if not, the reason why needs to be clear.
Public involvement in the overall research governance is important to getting the system right from a patient perspective and will help instil trust – patients are effective partners in ensuring good custodianship of research.
Important to have a governance system which is less about transparency and the production of data (as opposed to information) and more about the ability for people to track how decisions were made, by whom and why. Plus what is done if things go wrong.
Just in case you had missed it, it’s all about patient experience from now on! And a good thing too.
Or, at the very least, it seems the intention is to ask people more questions about their experience. A lot more questions in fact.
In the new world, I wonder, will we be met by NHS ‘chuggers’ as we walk through the doors of our local hospital for an appointment? Will there be follow-up calls? What happens if we refuse? Do we have the right to remain silent? Do we get the right to one telephone call before questioning? A friend perhaps? I need to know. I’m not good under good doctor, bad doctor questioning. Although I do respond well to plea bargaining about diet etc.
So, you might want to get your question in to the expert questioners first, by taking part in The Guardian’s live Q&A at lunchtime this Friday 15th June about patient experience and feedback. I tend to agree with Dick Vinegar’s take in The Guardian last month that patient feedback is ‘a blunt instrument that needs sharpening.’
Returning to the broader point about patient experience, recent ponderings on the subject led me today to the Cleveland Plain Dealer in Ohio, USA. Cleveland is a very rainy city if I recall from my brief trip there years ago. But this highly readable article felt like the sun coming out. Entitled ‘Art of patient satisfaction meets the science of medicine’ it shines a light on what putting patient experience at the heart of a health organisation’s culture really means in practice.
The organisation concerned is the Cleveland Clinic and its turnaround story has also been featured recently in the Harvard Business Review – you can read it here for $6.95! In sum, questions are a good starting point..but it’s what you do with the answers that really matters. Obvious point but patient experience does suggest it needs repeating time and time again.
Here’s some more on the Cleveland Clinic’s approach to patient experience. And this article - looking at the drive to appoint Chief Patient Experience Officers (CPEO) in New York hospitals in the same way that the Cleveland Clinic did – just shows how quickly these things become an industry in their own right. Is that good or bad? Bad if the industry loses sight of its mission.
Nonetheless I quite like the idea of being questioned by the CPEO next time I’m in Cleveland. Sort of feel they should be accompanied by R2D2 don’t you?
The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement
The Academy of Medical Sciences (AMS) today published its report of the meeting it held a few months ago, looking at progress with improving the regulatory of environment for medical research. I blogged about being a panellist at the meeting as you may recall. The report’s conclusions are noteworthy for the second bullet point about public and patient involvement which is eyebrow-raisingly strong for the Academy.
The Academy report has a lot to say about patient data issues so just to remind you that the leaflet produced by the UK Clinical Research Collaboration (UKCRC) partners, ‘Your medical records saves lives’ is available if you go here (see last on the publications list on the right-hand side-bar).
It is International Clinical Trials Day on Sunday (20th May) and there’s a short statement from the Chief Medical Officer and Director of R&D at NIHR, Dame Sally Davies, on the National Institute for Health Research (NIHR) website. There’s more information about what clinical trials day is on the NIHR CRN CC website here. I am looking forward to doing a round of radio interviews on Monday morning with a number of patients also taking part. The vision for 2013 is to make the day much more patient driven in every way, but this is a good start I feel.
Also next week – on the 24th May – I shall be taking part in a live Q&A about public and patient involvement on The Guardian’s healthcare network. Details will be forthcoming shortly but at the moment the link in the previous sentence will take you to a short video of me talking a bit about my history in the world of health care. For some reason I look terribly unwell, perhaps it is the beard which I have now got rid of. But I think the words make sense.
I understand Rare Disease UK is close to putting the final touches to its response to the Government’s consultation on a strategy for rare diseases. So, if you haven’t done so yet, let them know what you think.