February 24, 2013

A bit of a public involvement mash-up including that idea for an NHS Civil Society Assembly ^Reply

clinical research, clinical trials, medical research, NHS White Paper, NIHR, patient and public involvement, research regulation, Health Research Authority (HRA), Healthwatch, NHS Commissioning Board, Health and Social Care Act 2012, NHS Constitution, user involvement, NHS research, health research regulation, user controlled research • Tags: BBC Radio 4 Today Programme, Empower: Access to Medicine, Food and Drug Administration, Genetic Alliance UK, Guardian online chat on patient feedback, health research authority, House of Lords, HRA, Les Halpin, motor neurone disease, NHS, NHS Civil Society Assembly, NHS Commissioning Board, NIHR School for Social Care Research, Peter Beresford, public accountability in the NHS, Rare Disease Day, Rare Disease UK, rare diseases day, Saatchi Bill, Suzy Croft, Tim Kelsey, Today, United States, user-controlled research

So here’s my unsubstantiated personal theory.

It is that one of the root causes of the problems besetting today’s NHS’ is our failure to pay proper heed to the growing crisis in accountability and responsibility that has been a feature of our increasingly complex health system over the last seventy years. From almost the day that the NHS was born in the arms of a post-war nation, we have shown a lack of courage towards involving the public appropriately in the maturation of the service. In this vacuum, the evolution of the health service has been driven as much by unchecked romanticism (think of the Olympics ceremony) as anything else. Ideology has stymied the pragmatism that was needed to meet successive challenges. These challenges only get more daunting and difficult the more we delay. In my view, we can only resolve them by reforming its corporate governance so that patients and the public are involved in the running of the NHS from top to bottom.

With that in mind, that’s why I tweeted yesterday in support of the idea going before the NHS Commissioning Board to explore the idea of a citizen and community assembly (NHS Civil Society Assembly). You can find out more details about the proposal being considered at the Board’s meeting on Thursday 28th February in Manchester (you can register to attend) here (see Item 4). It’s a start.

* * *

The Guardian has posted its round-up of the on-line chat that I and others took part in regarding patient feedback in the NHS. The conversation ranged far and wide with little focus but it was interesting nonetheless. The ‘Francis report’ was published the day after and I seem to recall someone somewhere tweeting that patient feedback would be the source of trust in the NHS. Seemed a faintly overblown and risky claim to make. Ensuring that people can give their feedback and know that their concerns will be taken up is critical. But it will take more than this to restore people’s faith in the service.

* * *

Rare Disease Day is coming up later this week on 28th February (see Rare Disease UK website), so it seems worth pointing to several recent news items that have focused on efforts to bring about greater flexibility in how we do clinical trials. All with the intent of getting new treatments to people faster. First, this from the USA where the Food and Drug Administration’s (FDA) is talking about approving so-called ’Breakthrough’ therapies after only a limited number of research studies.

Closer to home you may have picked up on the Empower: Access to Medicines campaign including e-petition to the UK Government which, as of today, has 711 signatures. Les Halpin, who has MND and is one of the founder’s of ‘Empower’ was interviewed on the ‘Today’ programme in a curious piece which seemed to mash-up several issues: the right of people to choose to receive treatment with untried medicines (see also Lord Saatchi’s Bill in the House of Lords right now); how regulation is slowing up medicines development and; the problems with the EU Clinical Trials Directive. The discussion is important but so is clarity of purpose, motivation not to mention the solution.

Talking of regulation, if you check out the Health Research Authority (HRA) website and the presentations from its recent ‘stakeholder forum’ you’ll see there is an update on its public involvement activities including the Sciencewise project looking at public attitudes to health research regulation. I imagine we will see the results in late Spring and they should be fascinating. Plaudits to the HRA for taking up the challenge to improve the evidence on what the public think in this area.

* * *

And in other news, the NIHR School for Social Care Research has published the scoping review of ‘User Controlled Research’ by Peter Beresford and Suzy Croft. A must read. And finally, this looks wonderful, a new charity devoted to improving mental health research through the involvement of service users – ‘The McPin Foundation.’ Hopefully I will have cause to write at greater length about them in the near future.

December 10, 2012

Help us make sense of the placebo effect… ^Reply

clinical research, clinical trials, patient and public involvement, patient information • Tags: Clinical trial, medical research, patient information in clinical trials, placebo effect, public understanding of placebos, Southampton, University of Southampton

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

November 23, 2012

Healthtalkonline looking for people to talk about their experiences of patient and public involvement ^Reply

Healthtalkonline, medical research, patient and public involvement • Tags: healthtalkonline, louise locock, patient and public involvement, research, Research design

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.

October 19, 2012

Registration opens for Engage 2012: Responding to Change ^Reply

National Co-ordinating Centre for Public Engagement, patient and public involvement • Tags: Engage 2012: Responding to Change, National Co-ordinatng Centre for Public Engagement, public engagement

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!

October 15, 2012

Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project ¹

Parkinson's UK, patient and public involvement, public engagement, public involvement, Monument Discovery Project, Oxford Parkinon's Disease Centre • Tags: public involvement in research, Patient, University of Oxford, Parkinson's disease, Parkinson, Thames Valley, David, Research and development, Neurological disorder, Monument Discovery Project, Oxford Parkinson's Disease Centre, Professor Richard Wade-Martins, Parkinosn's UK, patient participation in clinical research

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.

Point is, and to cut a long story short, they are looking to recruit Parkinson’s patients from the Thames Valley area to join them in this work and Richard told me about this short video they have just produced to promote what they are doing. It includes interviews with two patients – David and Sally – who are already part of the study. Interesting to hear from them both – not just about why they are doing it but what taking part involves.

In a follow-up email to me Richard explained that they have recruited about 650 patients but are aiming for 1500. Patients are followed up every eighteen months they have a 97.3% retention rate. So they must be doing something right and I think this video shows how. I’d keep checking their website too as they have a lot of upcoming talks and events and seem pretty proactive in wanting to get the message out.

August 17, 2012

Cancer patient experience survey results show variations in access to clinical trials and research ¹

clinical research, clinical trials, NIHR, NIHR CRN CC, patient and public involvement, Cancer Research UK, cancer, patient experience, clinical trial costs, NHS Commissioning Board, patient recruitment into trials, NHS Constitution • Tags: Andrew Lansley, cancer, clinical research, clinical trials, Macmillan Cancer Support, Secretary of State for Health, National Cancer Research Institute, NHS Trust, Healthcare in England, National Cancer Research Network, cancer patient experience survey, cancer patient experience survey 2012, NHS league tables for research

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.

July 17, 2012

There is no point to the javelin ^Reply

clinical research, clinical trial costs, clinical trials, European Commission, European Patients Forum, Health Research Authority (HRA), medical research, patient and public involvement, patient recruitment into trials • Tags: Brussels, Clinical trial, Directive (European Union), EU Clinical Trials Directive, EU Clinical Trials Regulation, European Commission, European Patients Forum, European Union, health research authority, HRA, medical research, Patient, public involvement in Europe, regulation

It has come to this. The world’s top tennis players rush their shots to beat an 11pm curfew. Bruce and Sir Paul are turned-off mid-performance. And they don’t use real javelins in schools.

Looking across the the athletics field at my sons’ school sports day, I spied a clutch of children competing in the javelin. Except this is not a javelin as I remember it. It’s more like one of those foam beach toys. But nowehere near as good. In fact it’s probably more like throwing a giant, over-ripe banana. I admire the optimism of a small boy as he lets fly. I imagine his disappointment as it is carried sideways by the wind and belly-flops to the ground. There is no point to the javelin I mused.

UK scientists who have long complained about the blunt and risk-averse nature of the current EU Clinical Trials Directive, will no doubt be pleased by the Commission’s announcement today to bring in a sharper legislative instrument. The new ‘Regulation’ will mean lighter touch regulation for ‘low-risk’ clinical trials and a streamlining of the regulatory process across the EU. This, married with the EU’s recent enthusiasm for making trial data publicly available, also looks like good news from a patient perspective. Nature coverage here.

Whether it stacks-up against the five ‘wishes’ that the European Patients Forum (EPF) expressed during the consultation about the existing Directive remains to be seen. The Forum hoped that any revision of EU law would result in:

1. Ensuring meaningful patients’ involvement across all aspects of clinical trials;

2. Giving patients access to quality information regarding clinical trials;

3. Meaningful informed consent;

4. Transparency concerning the results of clinical trials;

5. Access to treatments after the end of clinical trials.

Faster, quicker, leaner trials, yes. Rules that reflect patient choice, voice and experience, I fear not.

The Commission’s own web pages have a stack of information available about the new Regulation including a ‘Citizen Summary.’ That all other documents constantly refer to research ‘subjects’ betrays the fact that the full extent of the patient agenda is not quite part of their core philosophy. Indeed. the summary is just that, it doesn’t really convince in explaining how citizen rights and interests have been reflected in the proposals.

When is science, or more particularly medical research, going to wake-up to the fact that the effectiveness of modern regulation and modern regulators hinges on a partnership between those being regulated and their consumers? Perhaps closer to home we might have greater cause for optimism. The new Health Research Authority (HRA) has just had its second public involvement workshop and is working through the options of what might be tangible outcomes of this work as part of its business plan.

Back in Brussels, I hate to say it, but it still feels like we are being given foam arrows. And with none of the fun of the beach.

Enjoy your summer holidays.

July 10, 2012

My key points to the ‘Caldicott 2′ Review of Information Governance earlier today ^Reply

patient and public involvement, Information Governance, Dame Fiona Caldicott, patient data, Caldicott • Tags: NHS, NHS Constitution, research, data, General practitioner, Medical record, Dame Fiona Caldicott, Caldicott 2, Facebook, NHS Constitution for England, Caldicott

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.

Choice

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.

NHS Constitution

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.

July 9, 2012

The NHS Commissioning Board Draft Mandate and patients in health research ^Reply

clinical research, clinical trials, Health and Social Care Act 2012, Health and Social Care Bill, medical research, NHS, NHS Commissioning Board, patient and public involvement, patient recruitment into trials, public involvement • Tags: Care Quality Commission, Clinical trial, Mandate, Mandate Objective 17, medical research, National Health Service, NHS, NHS Commissioning Board, NHS Constitution for England, NHSCB Draft Mandate, public health, public involvement

The Shard went up (officially). And the NHS Commissioning Board Draft Mandate came down from on high. All on the same day. Add the odd torrential downpour with its associated misery and these could be Biblical times.

I have come to the conclusion that it is my fate to be locked away somewhere remote and with an intermittent phone signal when such momentous events occur. On this occasion I was taking part in the Third NIHR Experimental Medicine Research Training Camp; a three-day residential meeting where over 60 NIHR doctoral students were learning the art of science communication. By their own confession they were taken out of their comfort zone. No more so than when they had to test their ideas in front of our excellent lay advisory panel. It forced them to think differently, to re-interpret their knowledge and expertise from a public and patient viewpoint. But the outcome in terms of their plans and ideas was superlative.

So what about the NHS Commissioning Board Draft Mandate from the point of view of public and patient involvement in research?

Unsurprisingly most attention has been drawn to page 26 of the Mandate headed’Promoting growth, research and innovation’ which looks at the role of the Board in promoting research by:

Working with research funders
Improving adoption and spread of new technologies
supporting patient participation in research

Objective 17 and associated Annex B set out more precisely how this will be achieved and measured. The commitment to measure increasing patient recruitment is important. It is my view that this data should not only be about participation rates (already available through the clinical research networks), but also the extent to which patients are being offered the opportunity to take part in research (a possible role for the Care Quality Commission (CQC) through its annual patient survey). Together, these measures would tell us much about the extent to which the NHS is realising its duties in terms of research and patient choice.

For what it is worth, my own view is that the real game-changer in the Mandate when it comes to participation, falls within the ‘Choice Framework’ set out in Annex D. For this begins to set – for the first time and in some detail - the expectation that patients should be offered the opportunity to take part in relelvant and appropriate research as part of their care and treatment. It gives them and us license to challenge the system to make that choice a reality. As will the reviewed and renewed NHS Constitution when it comes out in draft form this autumn. Or I hope it will anyway!

The less satisfying aspect of the Mandate is the weakness of its statements on public involvement – as National Voices has already pointed out. In fact, it is very poor indeed. I already have a growing sense of unease over the new corporacy which may be creeping over some Clinical Commissioning Groups (CCGs) as they tackle the issue of public involvement. A number of CCGs are clearly in the search for those with specialist expertise and skills, as opposed to finding those who can reflect and articulate the patient voice. Others, on the other hand, are doing their best to get it right. But it is difficult to get a cohesive picture of what is happening because the signals are intermittent and often broken-up.

So I would say this. It is important that we respond to the consultation on the Mandate to support and strengthen its statements about patient choice and research. But equally important is to hear people’s experiences about what is happening with public involvement locally, good and bad. For we must make the case that, in order to meet its objectives, the NHS Commissioning Board has to ensure a better foundation for public involvement than it has thus far.

Only if we provide space for patients to challenge the system will we see improvements in the way that care and treatment is provided and people’s choices honoured.

June 19, 2012

The life sciences, the public and the growth agenda…its not just about bums on seats ^Reply

AMRC, Cancer Research UK, clinical research, clinical trials, collaborations, Comprehensive Spending Review, David Willetts, Government's growth agenda, Health and Social Care Bill, Health Research Authority (HRA), Life Sciences Strategy, medical research, medical research charities, Office for Life Sciences, patient and public involvement, Public attitudes to science survey 2011, public engagement, public involvement, Research Excellence Framework, Science and Society, Science is Vital • Tags: AMRC, Association of Medical Research Charities, Cancer Research UK, Charitable organization, David Willetts, medical research, Medicine, NHS

This is an extract from a talk I gave on Monday to the Faculty of Medical Sciences at the University of Newcastle. I tried to answer the following question:

The life sciences are seen as fundamental to the nation’s health and to economic growth. But what is the public’s role in making this happen?

The alternative title is ‘Not just bums on seats’ for reasons that will become clear. I should add that, prior to my lecture, I had the opportunity to discuss the Faculty’s public engagement strategy with senior staff and colleagues and would like to thank them for their warm welcome and hospitality throughout the day.

Introduction

Over the next hour I’d like to explore with you why I believe a partnership between the life sciences and the public is fundamental to the former’s success in meetings its aims to improve the nation’s health and wealth; that our efforts as partners and as part of the growth agenda, must be conceived of as a joint enterprise.

I shall also argue that the life sciences needs to understand the distinct partnership roles that the public can and wants to play: as funder and advocate, participant, citizen, co-producer and trustee, before we can make the most of the opportunities that lie ahead. Only when we support these roles so that they are mutually reinforcing will we make the most of the opportunities ahead. Indeed, I would argue that the most successful science organisations will be those that understand and reflect this in their strategies and plans.

The public as fellow advocates

Why does this partnership matter, and why should it matter now more than ever? Well, let’s turn first to the role of the public as funder or donor, and as advocate.

As you may know, word is beginning to spread across Whitehall and Westminster if not wider, that the next public spending review is likely to take place a year earlier than expected. Also that, if the last spending review was felt to be uncomfortable, then the one about to land upon us is going to be even more so, with science facing a sterner test of its resolve.

The life sciences fared comparatively well to other sectors of the economy in the 2010 spending review. That was not just because of the level of funding but also because of the continuity of approach in terms of policy and direction with what had happened under the previous Government. This political commitment to life sciences has been sustained in the months since. Only last week the Science Minister, David Willetts, said in a guest blog for Cancer Research UK:

‘The life sciences are at the heart of this Government’s plans for sustainable economic recovery.’

In December last year we saw the publication of the Government’s life sciences strategy with its ambition of making the UK ‘a global hub for the life sciences’ by supporting a collaborative ecosystem, reducing regulation and driving innovation through ‘clusters’ and ‘catapults.’

A good part of that strategy – and what has happened since – has been devoted to enabling more research to happen in the NHS through: regulatory change – including the setting-up of the new Health Research Authority (HRA); enabling better access to patient data for research purposes; strengthening the rights of patients to taking part in clinical trials as part of their choices around care and treatment and as a right under the NHS Constitution; and establishing a new statutory duty on all parts of the new NHS to ‘promote research’ during the passage of the Health and Social Care Act.

None of this, of course, means that science generally will not face the same questions about impact, value, return on investment, the difference it has made to people’s lives, that it was challenged with last time.

In fact, one of the problems we will face is that the stories and evidence used last time will have likely devalued as a currency with HM Treasury and others simply because they will have heard them all before. A premium will be put on new evidence but also, perhaps, on similar evidence being presented with a next instalment that is compelling in ways which will persuade its listeners that they should support the authors to write another chapter of, better still, a new edition.

It is also going to take more than the vivacity of a ‘sectional’ ‘Science is Vital’ campaign or a science-only platform in the shape of the excellent ‘Geek Manifesto’ by Mark Henderson to win the argument. Science must better connect with the wider public if it is to make its existence and better still, its strengthening, of political expediency.

But at least we start in a potentially strong place on this too in respect of health research, in the shape and form of our medical research charity sector. Medical charities – as represented by the 125 strong membership of the Association of Medical Research Charities (AMRC) – collectively raise and fund over £1 billion of research in the UK every year. That figure is double what it was just over six years ago. Charities now represent over one third of all publicly-funded expenditure of research here in the United Kingdom, a situation that is unparalleled anywhere else in the world.

Given that the majority of these funds are raised from the British public – about £2,500 a minute by my calculation – charity is an important symbol of the public’s interest in research. Medical research is the leading charitable cause to which people give (in spite of a recession) in the UK – only the Netherlands has a higher percentage of its population raising money for research. And all the evidence suggests that the public see a donation to research as being of immense in making a difference, and stands as a good counterpoint to the argument that the public are semi-detached from research as an activity.

The other deliberate reason for pausing on charities for a moment is to ask you to consider one other important feature of their rise. The growth in charities as research funders has gone hand-in-hand with an increasing assertiveness on key issues in science – from hybrid embryo research to the Health and Social Care Act. It has been driven very much by those charities which are in turn propelled by a strong and active patient group or patient constituency by their side, knowledgeable not just about their condition or that of a loved-one but also about the research that is important to it.

And yet, for all this, it would be wrong for science to see medical research charities as a surrogate for true engagement with the public. Or believe, as I fear it sometimes does, that money donated is symbolic of an open-ended commitment to it by the public. Or as an illustration, case study or human interest story to be manipulated to make its case. The challenge is for science to make its own connections with the public as a fellow advocate.

That is no mean feat. For science will need to shift its philosophy from seeing the public as a crowd that needs to be educated, to a potential source of support that is to be carried with it. A friend of mine who used to produce rock festivals recently told me that the first act in the field to be used as a venue is to arrive and wait for the BT person to arrive and put in a phone line. The rest all stems from this. I sometimes look at what we do in science communication and what is passed off as engagement and wonder if we have only just got past that first act, with the phone line in place but with only the occasional incoming call being accepted.

The public as participants

Now that I’ve got that general point off my chest I wanted to turn to the part that I believe the public can and want to play in making health research an engine for wellbeing and growth. For I hope the most important reason for developing our partnership lies not with the need to make a political point, but more in the belief that we can achieve greater things to improve people’s lives if we work together.

The Prime Minister’s Life Sciences Strategy statement is as good a starting point as any for this part of the discussion because of the desire he expressed that every patient should see themselves as a research patient – as demonstrated by their willingness to share data with researchers and ultimately in taking part in trials: the ultimate goal being for the UK to remain a leading centre for clinical research in the world.

My role as NIHR National Director stems from a recognition within NIHR that, having established a world-class infrastructure for research – the supply side, we must now pay more heed to the ‘demand-side,’ that is creating more ‘pull-through’ of patients into research – including, but certainly not exclusively, clinical trials.

Generating this public demand for taking part in research will mean giving better information and tools to patients to find out about, and ask their doctors, about research such as the UK Clinical Trials Gateway (UKCTG). It also means better information and tools for clinicians. But, most of all, it will require an NHS system more set-up to meet this expectation than has hitherto been the case. Last month, on International Clinical Trials Day, NIHR CRN CC published a survey showing 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 and…
Less than seven per cent of people surveyed said they would never take part in a clinical research study.

The public appetite to take part in research would clearly seem to be there. Yet the picture is very patchy indeed when it comes to NHS Trusts that are geared-up – as one NHS Trust aspires – to offer every patient who walks through their door, the chance to take part in an appropriate clinical trial. The new NHS presents both challenges and opportunities to change this and the focus of our attention must be on the ecosystem that exists around a Trust. That is why initiatives such as VoiceNorth and the local collaborations it can build are going to become more and more important in the coming months and years.

But we will miss many opportunities if we take a ‘bums on seats’ approach to this agenda and define public participation only by the number of people who take part in trials. Clinical trials can only be a high visibility cloak for the participation agenda. They do not in themselves tell us much about the degree to which we have created a research-active population.

Citizens, citizens, remember we are citizens

Just last week I was talking to some colleagues about the degree to which research participants are kept at arms-length in many cohort studies, studies which often ask their public to sign-up for life so as to generate new data and learning to improve health. The reasons for this are many and some are well-founded, but not without solution.

The opportunity missed is that of learning from people how these studies might evolve, adapt and share over time in keeping with people’s lives and needs. The risk is that, before too long, people who see themselves as consumers with rights in every other aspect of their life will begin to feel somewhat used and abused, word will get round and researchers will metaphorically see doors closing as they turn into the street. The same is true in clinical trials where many patients find a frustrating lack of attention paid to basic ‘rights’ such as the right to receive feedback on the results of a trial and what it means.

In this, as with all research, we need to begin to see people not purely as participants but as citizens, members of a community who have rights as well as responsibilities in the name of pursuing new knowledge. Indeed, citizenship is how we should frame the relationship between researcher and patient. Citizens, citizens, remember we – both you and I – are citizens.

The public as co-producer

The other role that the public can play in making life sciences a driver of economic growth and the nation’s health and well-being is as co-producer.

We now have a growing body of evidence – the starting point for which is encapsulated in the 2010 NIHR/INVOLVE report ‘Exploring Impact: Public involvement in NHS, public health and social care research’- that involving the public can help strengthen research design, shape research strategy and agendas, execute the research efficiently and disseminate its findings to a wider audience.

Whether it is the prostate cancer trial that was saved from failure once patients were involved in the way the trial was articulated to potential participants. Or the James Lind Alliance Priority Setting Priority Setting Partnerships approach that is now embedded in NIHR and brings together patients, researchers and clinicians to identify priorities for research. In fact in many other countries the UK is considered so good at this stuff that they think it is the land of milk and honey – to quote a colleague of mine.

But in spite of the many successes that we – INVOLVE and its partners – have to our name, we also face significant challenges. In fact the task ahead is best encapsulated with two pieces of evidence. The first is a paper published in 2009 by Rosemary Barber and colleagues – Rosemary is a member of INVOLVE – based on a survey of almost 1,000 health researchers. It showed that less than one fifth had involved the public in their work and that many of those surveyed were deeply apprehensive about public involvement on a number of scores.

The second piece of evidence is from a report that INVOLVE published with the National Research Ethics Service (NRES) at the end of last year. This examined the extent to which public involvement featured in research grant applications coming before ethics committees. It then looked at the funder of each of these.

In shorthand the report shows that just less than 1/5th of researchers responded with plans to involve the public, 43% of researchers seemed to misunderstand what they were being asked and 38% said they had no plans for public involvement.

There is quite a lot of variation between different types of research as defined by who the funder is - NIHR funded research performing well, charity funded research applications being average considering their basis of support, and industry seemingly having no knowledge that there is a public out there at all!

An interesting post-script to the industry story is of course that, as its representative associations and others have tightened up the rules on what it can or cannot do to inform and contact patients, so it has pulled away from even the most benign public engagement activities. But that is a story for another day.

From an INVOLVE perspective, the main challenge continues to be individual and institutional attitudes if not outright resistance to public involvement. Understanding the reasons for this and determining the best way to tackle it is something you may well have views on today. The opportunity for me seems to be how we might move co-production out of the handcuffs of what happens in the traditional peer review process and its obsession with lay membership and patient representation, to using new technologies and social media to gain a wider view and insight from the public at all stages. We need to think differently and more creatively about this stuff.

The public as trustee

There does seem one final way in which the public and researchers can find mutually beneficial ground on which establish a partnership.

I know that ‘Impact’ – particularly in the context of the Research Excellence Framework (REF) – is a highly popular topic of conversation in universities. It is also very much on the public involvement agenda as well. Whereas you fire brickbats, we are still at the stage of scratching our heads to some degree. What is the evidence? How can we best demonstrate it? How do we define value? Should we bite the bullet and begin to crunch some numbers if I may mix metaphors for a moment? And I am sure we have much to learn from you and other colleagues on how best to tackle this agenda.

But given the rise of ‘Impact’ as an agenda, and the inevitability with which Government is likely to ask for evidence of the soundness of its investment in science it would appear absolutely essential for science and its public to be working together to articulate this value. And that brings me back full circle to the role of the public as fellow advocate.

And yet it is more than that. It has always seemed to me that the ideological blind-side of science when it comes to public involvement has been its failure to see it as protective air cover for the sort of political storms and difficult public debates that do come along more regularly than would we wish.

Even if people find it difficult to accept public involvement as a value-add in terms of the quality and relevance of science, then the societal trends towards ever greater scrutiny of what those who receive taxpayer and public funds do in its name, should surely point to the need to involve the public as part of good governance and accountability to instil wider public confidence.

Close and conclusion

If you were to ask me for a vision of the future it would be as follows:

- For citizen-driven research to be seen as integral to the the UK’s health research ecosystem, a way of doing research which brings many partners together including the public to derive ever-greater value out of what we all do, and where there is mutual respect and acknowledgement of respective roles and expertise.

- A health research system in which all our public funders have public involvement as a driving philosophy for the way they work.

- And an NHS in which patients are challenging their Trust and doctor to make real their right to participate in research as part of their care and treatment.

I hope today that I have given you good grounds to see the public as an important partner of the life sciences in meeting its ambitions, in also setting out the many roles the public can play to this end.

I said at the beginning that the best chance of success will come if we see these roles as mutually reinforcing and find ways to make that happen. Equally, the most successful science organisations in the future will be, I believe, those that offer diverse opportunities to the public to be a partner and allow their public to switch between these roles according to the needs of the time. My sense is that you are thinking along the same lines here at the Faculty.

June 13, 2012

Are you a patient? Then, I’m holding you for questioning. You have the right to….. ^Reply

NHS, patient and public involvement, patient experience • Tags: Chief Patient Experience Officer, Cleveland, Cleveland Clinic, CPEO, Harvard Business Review, Healthcare in England, Malcolm Grant, National Health Service, NHS, NHS Commissioning Board, Ohio, patient and public involvement, Patient experience, Patient questionnaires, Patient surveys, The Guardian

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?

May 18, 2012

The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement ^Reply

Academy of Medical Sciences, clinical research, clinical trial costs, clinical trials, Dame Sally Davies, medical research, NIHR, NIHR CRN CC, patient and public involvement, public engagement, public involvement • Tags: Academy of Medical Sciences, Chief Medical Officer, clinical research, clinical trials, Genetic Alliance UK, government, Guardian, International Clinical Trials Day, National Institute for Health Research, NIHR, NIHR CRN CC, Public and patient 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.

May 11, 2012

We need more than better chat-up lines to increase participation in research ²

clinical research, clinical trials, NHS, NIHR, NIHR CRN CC, patient and public involvement, public engagement, public involvement, Science and Society • Tags: clinical research, clinical trials, Corporate social responsibility, CSR, New York City, New York Times, Pedestrian, public engagement in research, public involvement in research, Social Sciences, United States, Walk Score

‘Pedestrian freight.’

It is a term I had not come across until last week.

I believe it is the phrase once used inside train companies to describe you and I, the commuters who throng with fortitude through our stations up and down the land every day. Perhaps it still is, I don’t know.

Such ‘internal’ phrases can be so telling of the culture from which it has emanated can it not? When out in the open they become symbolic of all that is wrong with the organisation and its attitudes to us. Once in common circulation they are difficult if not impossible to shift, to everyone’s detriment.

The phrase has stuck in my mind because I have been giving much thought this week to the ‘message’ we must convey if we wish more people to engage and participate in research.

The use of ‘subject’ rather than ‘participant’ is a good example of the language in common use across research which does little to help incentivise wider participation. Corporately, often only punctuation separates phrases about public engagement and participation from those that refer to growing the economy or strengthening UK plc. Maybe such utilitarianism is a throw-back to the days when we were all trying our hardest to get the best result for researh in the Comprehensive Spending Review (CSR). Or does it go further back? Is it any wonder why my neighbours latch on to the phrase ‘guinea pig’ when we have done little to put something else in its place?

Change this we must, particularly when it comes to clinical research. We really do have to communicate about research and people’s role in it, in much more human terms. We must relate it to people’s care and its potential impact on the care of their fellow citizens. The person and the ’personal’ must be much more in the foreground. And while charities and others are getting better and better about this, there is still a long way to go.

But to be frank, I am also wary – and weary - of talk of getting the ‘message’ right. For it implies a superficial exercise, a face-lift, something that is only skin-deep: ‘if we could only get our chat-up line better, the dating game would be so much easier.’ Or so the thinking goes.

Deeper changes in our thinking and practice must happen: changes that visibly put ‘respect and dignity’ at the heart of what we do, that convey a commitment to rights as well as an expectation on people to uphold their responsibilities, that link research as firmly to patient experience and patient outcomes as they do to improving our scientific knowledge and understanding.

‘Hand in hand not one before the other’ is the quote that springs to mind.

February 16, 2012

NHS research up close and personal: ‘Research People’ site tells the stories behind the story ^Reply

NHS, NIHR, NIHR CRN CC, patient and public involvement, patient experience, public engagement • Tags: Care Quality Commission, clinical research, clinical trials, CQC, National Institute for Health Research, NHS research, NIHR CRN CC, Research People

Returned from half-term leave today thinking that I might write about the latest Care Quality Commission (CQC) patient experience survey.

After a while looking at the results I began to think: is there a good reason why there isn’t a patient ‘out of body experience’ survey conducted and published? It might come closer to the experience of some of the patients I talk too. Not that the survey isn’t important but it’s difficult to see beyond all the figures and find the voices of the people who matter.

Anyway, instead, I thought I would post the link to a new web page called ‘Research People’ - effectively ‘video diaries’ filmed by doctors, nurses, GPs, clinical trial co-ordinators and patients about their involvement in research – produced by the NIHR Clinical Research Network Co-ordinating Centre (NIHR CRN CC).

I have to say I have been really impressed by what NIHR CRN CC have been doing on the communications front in the last few months. It deserves to get a wider audience. Love it.

January 29, 2012

Government consults on Healthwatch membership ³

Health and Social Care Bill, Healthwatch, NHS, NHS White Paper, patient and public involvement • Tags: Angela Rippon's, CHCs, Community Health Councils, Healthwatch, LINKS, patient and public involvement, Patient's Association

The Government last week launched a public consultation seeking views on the membership of Healthwatch England.

Healthwatch England will be the ‘consumers champion’ under the NHS reforms. It will be what they call a ‘statutory committee’ of the Care Quality Commission (CQC) and is expected to be up and running by the autumn. Many, including National Voices, have argued that it should be an independent body.

In the consultation,the Department of Health asks for views on how large the Healthwatch committee should be, how people should be appointed to it(including whether they should be elected), and what sort of experience they should have. It says that they should have a background in active patient and public involvement.

The document is quite helpful in describing where Healthwatch fits into the overall scheme of things. There will be local Healthwatches as well. And a key issue will be ensuring that these local bodies form a strong network. Also, that they have a strong link to the England committee. We have singularly failed to achieve this aim with previous incarnations of patient and public involvement forums, beginning with Community Health Councils in the 80/90s or their successors including ‘LINKS.’

As an aside, you might wish to read Angela Rippon’s interview in the Sunday Times today. She is now a Vice-Chair of the Patients Association (paywall).

November 15, 2011

You cluster if you want to…the single most important translational gap in UK clinical research today ^Reply

Budget 2011, Campaign for Science and Engineering (CaSE), clinical research, clinical trials, health, Health and Social Care Bill, medical research, NHS, NHS White Paper, NIHR, NIHR CRN CC, patient and public involvement, public engagement, public involvement, Science and Society • Tags: AMRC, Association of Medical Research Charities, clinical research, clinical trials, Cooksey, Health Service Journal, public attitudes to health research, therapeutic capability clusters, translational gap in science

A colleague of mine put up two slides at a meeting today which neatly encapsulated for me the key strategic – perhaps translational gap – in uk clinical research right now.

On the demand side, the first showed the key results from the Association of Medical Research Charities (AMRC) commissioned MORI poll of public attitudes to health research earlier this year. I quote:

“97% of the public believe that it’s important the NHS should support research into new treatments according to an Ipsos MORI poll published on Thursday 9 June. The poll, commissioned by the Association of Medical Research Charities (AMRC), Breast Cancer Campaign and the British Heart Foundation also shows that 92% of people believe it’s important for the NHS to support such research funded by charities.”

Then, on the supply side, these are three of the results from a recent Health Service Journal (HSJ) article

- 38% of clinical research professionals agreed that clinical research is part of their Trust’s planning
- 39% agreed that clinical research has a high priority in their NHS organisation’s strategy
- 61% agreed that clinical research is peripheral and driven by individuals in their organisation.

In essence what this means is that while the public appetite for health research is there, and good systems are now in place for making research happen, we are still depending on enthusiasts to get if off the ground in NHS organisations.

When the Government releases its Life Sciences package on 5th December, I’ll be judging it by how far it might go to closing this gap. You can have as many science clusters as you like but, as one famous political leader said: ‘you cluster if you want to, i’d rather spread the word instead.’

Or something like that.

August 25, 2011

Canada gets the ‘patient involvement in research’ bug ^Reply

Canadian Institutes of Health Research, INVOLVE, patient and public involvement, PatientsParticipate!, Public attitudes to science survey 2011, public engagement, public involvement • Tags: Canadian Institutes of Health Research, CIHR, INVOLVE, public involvement

A few weeks ago I mentioned meeting the Director of the Canadian Institutes for Health Research (CIHR) to discuss public involvement in research. Last night I stumbled on the following announcement by the Canadian Government about the development of a patient-orientated research strategy.

Excellent news. I am sure the news has very little to do with my meeting! However, I do recall once writing a piece for a local rag lambasting the local authority and rail authorities for letting the town station go to ruin only to find the developers move in the day after the article was published. I recounted this rather in a rather red-faced fashion to a friend and they said I should put it down to the ‘power of the press.’

Anyway, excellent news.

August 23, 2011

From I Claudius to iLansley…phone apps in the new NHS ^Reply

cancer, Cancer Research UK, clinical research, clinical trials, GPs, health, Health and Social Care Bill, health technology, Health White Paper, Information Revolution, medical research, medicines, NHS, NHS White Paper, NIHR, NIHR CRN CC, patient and public involvement, PatientLikeMe, PatientsParticipate!, public engagement, public health, public involvement, social media • Tags: AIIR Consulting LLC, Andrew Lansley, Cancer Research UK, clinical research, clinical trils, Department of Health, Harpal Kumar, health apps, mobie phone apps, NHS reforms, Secretary of State for Health, Stress Check, The Guardian, www.mapsandapps.dh.gov.uk

The summer break has clearly done the Secretary of State for Health, Andrew Lansley, a world of good.

From beating a lone path as the libertarian Claudius in the face of a centralised health service, he has resurfaced this week as the man for all seasons to launch a competition for the best ideas for new mobile phone health applications. The public can also name their favourite health app. See also The Guardian today.

Good for him that’s what I say and what a good idea. The only criticism I have is that there is no money being put towards developing the winning ideas, no doubt because there’s none left after the NHS IT fiascos of late.

From The Guardian also comes an article in which the CEO of Cancer Research UK, Harpal KUmar, talks about this being a golden age for cancer research, as a presage to their next great push on clinical trials being launched next week.

One hopes that the brightest minds in the research community are putting the threads of these two stories together in potential entries to the Department of Health competition, apps that could be used as or as part of a clinical trial or, for instance, that patients could use to find out about trials – a sort of ‘clinical trials near me’ app. This certainly seems to be what is happening in the US as I have blogged before.

Being a mere consumer of (too) many apps and not a mobile phone app designer I can only vouch for the ‘simple is best’ view as to what works. So my favourite health app at the moment is ‘Stress Check’ designed by AIIR Consulting – the free version of which is basically a quick questionnaire which gives you a stress score and also allows you to track your stress levels over time.

Not wishing to incur the wrath of Ben Goldacre, the blurb for the app says it uses a research-based assessment tool but I’ve not checked this out to be honest.

I am more pleased to be honest that my stress score seems to have gone down from 75 to 63 in a month and not all because of my teepee holiday in Cornwall (actually I suspect it would have probably gone down more had I been on a holiday where everything was fitted i.e. bathroom, kitchen, children etc).

No, it may not have given me a deeper understanding of some of the causes of my stress but it has helped me to change my behaviour by a) engaging me b) giving me some stress management tips and c) by giving me a sense of progress. Quite simply, in helping me to focus on this potentially harmful aspect to my life it has done its job. That’s all I can say.

Hail Lansley.

July 27, 2011

Social media leaving doctors and researchers…virtually clinic bound ^Reply

cancer, medical research, patient and public involvement, PatientLikeMe, Pharmaceuticals, public engagement, Science and Society, science blogs, social media • Tags: Blue Chip Marketing Worldwide, BMA, Croakey, GPs and social media, Information Week, Matt Katz MD, Mayo Clinic Centre for Social Media, Russell Harder, social media and health care, social media and health research, www.ihadcancer.com

I suspect this has been picked-up by someone else but an article in the US publication ‘Information Week’ from 11th July this year provides further data on the rise of social media (twitter, blogs, Facebook etc) as a tool by which patients are seeking and sharing health information.

It actually looks at a report by a marketing firm, Russell Harder, based in Minneapolis. Sounds as though the firm used some hyper-sophisticated search technology to track various illness related phrases being used on social media and hey bingo. The highest density of social media traffic occurred in cancer with breast cancer well ahead of other cancers. Women used social media more than men.

Russell Harder posits that there is a growing market opportunity for organisations to develop online information designed specifically for those recently diagnosed with a condition, noting that other studies suggest that this is the point that people begin an online journey with their illness as well as a physical one. They would say that wouldn’t they I suppose but the point is a good one.

Indeed, I noticed the following site was launched in New York earlier today to provide cancer patients with a space where they could connect with fellow sufferers. Plus a glance a glance at one of my favourite blogs at the moment ‘croakey’ in Australia revealed an open and interesting account of a social media workshop that took place at the Primary Health Care Research Conference in Brisbane.

It reminded me to look closer to home at what the professions are doing in the UK and thought people might find the recent BMA guidance to doctors on using social media, a helpful resource even if it does come over as a little cautionary and stilted in tone rather than embracing of the newest media. Having to dowmnload a pdf sort of says it all.

Anyway, going back to Information Week, the article says that health professionals cited concerns over ‘confidentiality’ as the reason for their hesitancy in using social media tools. What, theirs or the patient’s? Sorry, that was a bit flippant wasn’t it?

But it does includes a link to a great site – the Mayo Clinic Center for Social Media – which is all about embracing social media as well as engineering a good debate about the issues. For instance, you’ll find a well-articulated blog there from a few days ago about the march of social media and the questions it raises for doctors. It is written by Matt Katz MD whose on the External Advisory Board of the aforesaid website.

More specifically on health research another US study by Blue Chip Marketing Worldwide says that a survey of 179 adults found that while 81% were interested in participating in clinical trials only 16% had done so and 30% were aware of clinical trial websites. Go figure as the yanks like to say.

Am going to bed now with an essay question emerging in my head about who is exploiting who in the social media arena as I turn off my light sabre. Good night.

June 23, 2011

Exortic science goes kryptonite, perhaps ^Reply

INVOLVE, patient and public involvement, PatientLikeMe, public engagement • Tags: Alice Bell, clinical trials, I'm A Scientist, INVOLVE, PatientsLikeMe

Today’s headline is taken from the menu for my Indian take away last night which talked of ‘exortic sauces.’ A spelling mistake it might be but I was rather taken with the idea of my curry sauce exorting me to savour its spices.

In a similar fashion do I feel the desire to devour all the exciting stuff that came out of my albeit brief appearance at the PatientsParticipate conference last Friday. It is the sort of science engagement that exorts you to explore, learn more and wonder…..

The US site PatientsLikeMe featured quite heavily in my session so I decided to post the link again for those who wish to follow the trail. For those new to it, patients can share their experience with others and this ‘data pool’ is increasingly becoming a bank for patients and researchers to find eachother with a view to trials etc.

The blog is pretty good too if you are happy to excuse the new media terminology about ‘mash-ups’ etc. It’s a real feast if I may to continue the food analogy.

[by the way if people have links of similarly interesting links I would be delighted to add them on the site)

PatientsLikeMe seems to be coming out daily with announcements about new ways in which people are using the site and also the partnerships they are forging with others and some of you may have views on the work they are now doing with pharmaeceutical companies.

Yesterday I had my first ‘induction’ meeting as Chair with INVOLVE’s excellent Director, Sarah Buckland. Although we didn’t talk about social media and PatientsLikeMe as such we did discuss the long-standing bias against user-controlled research and the degree to which science has not supported research and innovation led by it’s ultimate users, recipients or customers.

There comes a time when all traditional hierarchies are turned on their head by force of circumstance or societal change, change which they are unable or refuse to embrace. Coming away from my conversation with Sarah I wondered whether we are on that course now where social media and technological advances essentially mean that the tools are increasingly there for the pioneering patient or extrepreneurial member of the public to take control of their participation in ways that have never been envisaged.

To me, that’s terribly exciting. Challenging, but exciting.

To finish, and since I am in subversive mood, I thought I would finish by also signposting you today to Alice Bell’s latest blog which talks about the I’m a Scientist initiative that has been run by some universities. I am not going to steal her thunder by reiterating her story of what happened. But it sounded great fun and one of those instances where everyone comes away inspired by the connectivity of it all. She asks for suggestions of similar ideas – I quite like the idea of a Krypon Factor style contest in which combined teams of scientists and members of the public are pitted against one another to solve problems.

Now you know why I never became a tv producer.

simon denegri's lay review

The public and health research

Category Archives: patient and public involvement

Help us make sense of the placebo effect… ^Reply

Healthtalkonline looking for people to talk about their experiences of patient and public involvement ^Reply

Registration opens for Engage 2012: Responding to Change ^Reply

Patients, David and Sally, talk about their part in the Parkinson’s Monument Discovery Project ¹

Cancer patient experience survey results show variations in access to clinical trials and research ¹

There is no point to the javelin ^Reply

My key points to the ‘Caldicott 2′ Review of Information Governance earlier today ^Reply

Are you a patient? Then, I’m holding you for questioning. You have the right to….. ^Reply

The Academy reports on research regulation…and a reminder of the Guardian’s Q&A about public involvement ^Reply

NHS research up close and personal: ‘Research People’ site tells the stories behind the story ^Reply

Canada gets the ‘patient involvement in research’ bug ^Reply

Exortic science goes kryptonite, perhaps ^Reply

Follow “simon denegri's lay review”

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Share this:

Like this:

Follow “simon denegri's lay review”