Where next for patient involvement in research ?

A very welcome editorial in the BMJ will I hope give greater strength to the growing movement for provision of patient involvement in research.

I have been an ‘involved patient’ for 16 years. In the early days getting to understand research was the first challenge, we had no training available to us. Our professional research colleagues could hardly be more welcoming but were actually confused about how to handle us, could not recognise situations we could help with, and sometimes could not even handle the questions we asked. So we learned together.

There were a few enlightened researchers and leading doctors in those early days. It is almost unfair to pick two out for comment but they were outstanding in their recognition of the issues and in the way that they addressed them. Professor Sir Mike Richards, the first National Cancer Director, and Professor Peter Selby, the first Director of NCRN and later what is now NIHR CRN. Both realised that what they were changing was a process and that it would take time. We all wanted it to be quicker but there is an inertia in the affairs of man which means that changing established cultures can rarely be rushed.

There was a lot of pressure in the early years to demonstrate the ‘value’ of patient involvement as an intervention. By assessing its direct impact on a research project through something which may be as simple as a consent information sheet, the hypothesis was that the impact must be measurable. This question is still heard in Europe, voiced by research communities who do not want, for whatever reasons, to recognise the role that patients can play. Such assessment requires some kind of baseline against which the changed outcome can be compared. Most attempts to describe the impact of patient involvement in these terms have been trivial at best and laughable in many cases. Publication in a peer-reviewed journal is noticeably hard to find.

Patient involvement in research is about changing the processes by which research progresses. It does not change the science, although questions raised may cause design modifications by the scientists, but it modifies the environment – the timing, the nature of discussion, the emphases placed at different times, the interactions between team members etc. It will also bring in a different consideration of the impacts on patients entering the study, the ethical boundaries, the nature of communications with patients, and can play a part in deciding about data analyses and the promotion of results.

Even in the UK where patient involvement is now almost ubiquitous in healthcare research, this difference is not fully understood. Many research groups pride themselves on patient involvement which is in fact quite trivial, They involve patients in reviewing patient issues raised by their studies, reviewing consent information, sitting on Trial Management Committees, but have resisted a deeper involvement in the whole research process. That is their next step.

This puts an interesting burden on the researchers who are in such partnerships with patients. They must start to more consistently integrate their patients in everything they do. They must also report their subjective responses to these partnerships and the way they evolve so that we can build a picture of value which can help the more recalcitrant recognise the importance of involvement. We, the patients, cannot do this alone.

I welcome steps such as this week’s announcement by the BMJ that from next year it will not only require researchers to report on their patient involvement activity but also on the dissemination of their results to patients.

Every bit as important is the growing reach of the Biomed Central journal Research Involvement & Engagement. RI&E is the only peer-reviewed journal dedicated to papers on patient involvement. (I declare an interest – I am on the Editorial Board).

The moment is right for the debate about patient involvement to widen and develop on an informed basis. We have to find the mechanisms to create a common understanding of where we are today, the different models of involvement, the perceptions and expectations which we have individually and collectively based on the experiences we have had, and the reports of innovative practice and clearer thinking which have come through in the publication of papers on different implementations. We have the opportunity to define an agenda which sits comfortably with the research community and which can be implemented pragmatically, ultimately for patient benefit.

There are some underlying ‘big’ issues to address as well. One is how can involved patients hold their research partners to account, should that be necessary. Another thorny issue is should involved patients be remunerated in some way and how can this be done without conflicting with their independence.. Even if some of these issues cannot be answered they can be clearly defined and understood. Maybe some form of guidance can be offered. Contributions to the ongoing debate would always be accepted by interested journals.

Despite these complications the underlying rationale for patient involvement in research is simple. Research is a collaborative activity which should maximise quality by including representation from all those with a stake in it. The (over-used) patient mantra, ‘nothing about us without us’, probably applies here more than anywhere else.

A Challenging Month

I don’t often write about what I have been doing, more about what I am thinking. But June into July has been quite a month.

I joined the ECCO Methods in Cancer Clinical Research Workshop in June. This is held at Zeist in the Netherlands, not far from Utrecht. It used to be held at Flims in Switzerland, an extraordinary venue, but increasingly inaccessible and costly in these days of austerity. I enjoyed six year at Flims from 2007 to 2012, as the only patient on a faculty of 40 supporting 80 Fellows attending the course. The pattern is similar at Zeist. I had the real pleasure of working with 40 of the young oncologists developing studies. It was demanding and called on all my knowledge of cancer and of being a patient, whether that was developed from personal experience or from those who have shared their experiences with me over the years.

Coming home called for a rest. However my blood pressure medication needed adjusting and I was becoming increasingly unhappy with the actual medication itself. It seemed to be causing hazy periods, lack of concentration and increased fatigue. However I was also getting increasingly chesty, with a tightness on my breathing. Then on Wednesday I fell. I had my amputation over ten years ago and have never fallen since. Until now. How it happened showed how woolly my thinking had become. I failed to complete the fitting of my prothesis properly and walked out of the artificial leg. Gravity took over. I landed on the stump, the pain was excruciating. No breaks, just some severe bruising and a few scratches. Spent the rest of the day recovering and started moving around again the following day but I was getting more and more breathless.

By Friday morning I was an emergency admission to hospital in Shrewsbury. After various tests and discussions it was decided I had nothing more complicated than a lung infection and after 60 hours on oxygen, some strong antibiotics and a valuable review of my cardiac functioning I was released home on Tuesday. See earlier blog.

Thursday was my cancer follow-up. Different hospital, the Robert Jones & Agnes Hunt Hospital in Oswestry, and because it is a specialist orthopaedic hospital which does not handle medical cases the contrasts could not be greater. In addition the new cancer unit which was only opened last year is a pleasure to visit. I know the team well, they have treated me too often, and they are doing some really good pioneering work on, for example, nurse-led triage. All OK and I was grateful for a careful review of all the imaging of my lungs from recent days. It is now five years since my latest treatment but with my chequered history of recurrences I am continuing in follow-up.

Two moments of special pleasure. The hospital has started a bio-bank, so I was able to sign up and offer more tissue for research. Then they told me they had acquired a new consultant surgeon and introduced me to her. The surgical team now has more female surgeons than male, a situation I could see coming but did not expect so quickly. It has been one of my true pleasures in 16 years of patient advocacy to see the shift in oncology away from male dominance. It is also evident that women are bringing new ideas into research and it can only work to the benefit of patients.

Back home, no more appointments. Still not right but getting better every day.

National PPI Standards

Last year when the draft National Standards for PPI were published by NIHR I was openly critical of the draft. I felt then it was pushing hard for mediocrity, it lacked ambition, and that the minimum required would be all that those involved would feel challenged to achieve.

Now that the final version is out (published on 20th March) I have to say how pleased I am with what has evolved. The standards include some real challenges and in Standard 6 in particular I should be surprised if many places in their first assessment come up to scratch.

These are the headline standards.

Standard 1: INCLUSIVE OPPORTUNITIES

We offer public involvement opportunities that are accessible and that reach people and groups according to research needs.

Standard 2: WORKING TOGETHER

We work together in a way that values all contributions, and that builds and sustains mutually respectful and productive relationships.

Standard 3: SUPPORT & LEARNING

We offer and promote support and learning that builds confidence and skills for public involvement in research.

Standard 4: COMMUNICATIONS

We use plain language for timely, two way and targeted communications, as part of involvement plans and activities.

Standard 5: IMPACT

To drive improvement, we capture and share the difference that public involvement makes to research.

Standard 6: GOVERNANCE

We involve the public in our governance and leadership so that our decisions promote and protect the public interest.

The process has remained similar to that in the original draft. Each Statement is supported by a number of Indicators and the manual gives examples as what would qualify. The nature of the structure indicates that discussion and debate amongst all involved, and all stakeholders within an institution, should be part of the process, with consensus necessary. This in itself will be challenging to some institutions which tinker around with largely tokenistic PPI. It will hopefully open up the opportunities to drive meaningful patient and public involvement deeper into the organization.

Well done NIHR and INVOLVE. Lets get people using them and lets see how these standards re-energise the acceptance of PPI into the NHS.

The Press Release

The Basic Standards

The full Manual (Downloadable pdf)

Detecting the otherwise undetectable

The perfect pill is the one which treats the feared but undetectable illness. It leads to sales in the billions as everyone seeks to take it. Day dream profits for a pharmaceutical company, Nobel prize for the scientists behind it, new energy for the global economy … enormous potential … but we are not there yet.

The idea of testing for the otherwise undetectable cancer is here. It is only one step more to get to the day dream. The test delivers genetic mutation information, this must have pharma companies salivating. The now-detected but otherwise undetectable cancer is not treatable by non-medical means unless it is allowed to develop to the point where it is identified and treatable … unless medical therapies are developed. Demand for those pills will be huge. Genetically targeted therapies cost thousands.

Roll on the pill revolution.

Is this blood test, which got so much press coverage over the weekend, really as valuable as reports suggest? Fortunately some level heads from UK academic research were more careful when interviewed. Lets also look at it from a patient viewpoint and ask if it will serve the objective of earlier diagnosis in the way which is being suggested.

Screening was implied. Screening who, is not explained. A screening method must balance its costs against the savings created by earlier detection. This means criteria to refine those screened to the most likely people to show a positive result. Screening also has downsides. It has false negatives (failing to spot someone with cancer) and false positives (indicating cancer when there is none present). It can lead to over treatment and unnecessary long term side effects. And of course it creates anxiety – which would include those who have been diagnosed too early to be effectively treated because no tumours are visible. This will create demand for a pill.

Used in primary care the test would have value if a practitioner suspects cancer. Today such patients are sent for imaging and other tests to gather actual evidence. A blood test may do that quicker and would have particular value where symptoms are vague. It could lead to a quicker and more accurate diagnosis in cases of real uncertainty. But treatment may not necessarily start more quickly … unless a pill is available.

Before introducing the test we would have to be certain that all rare forms of cancer can be covered, maybe not immediately but quite quickly after the test becomes standard practice. Expanding eight cancers to several hundred could prove challenging. Its no use saying to a patient your vague symptoms don’t show you have one of the eight cancers if they are shortly afterwards diagnosed with a rarer cancer. From a patient viewpoint cancer is cancer, the test failed.

So once again I am finding myself appealing for context when clever medical science is discussed. The idea of a blood test providing early recognition of cancer has important implications. If the technique comes through the next stages of research showing a high percentage of accurate diagnoses, covering more cancers, with few (if any) false negatives or positives in early stage otherwise unidentifiable cancer, then we will be able to think about changes in primary care practice. The proper analysis of practical and cost issues, including the cost implications of consequent medical therapy, can then be addressed.

I think this is all a long time away and I have to ask, is a pill the real objective of this research? Society needs better ideas than this one to detect cancer earlier. Don’t day dream too soon.

We Are Stronger in Partnership

This theme is often the sub-text behind a conference combining patients and clinicians on the same agenda, but these are usually patient-led conferences and the theme rarely makes its way into professional events. When it happens it is done very cautiously, patient contributors are usually sought at the last minute, and even though the audience feedback is almost always appreciative the repeat event does not do it any better.

Out with the old and in with the new, that was the approach taken by the Rarer Cancers Europe project when developing a training course for both patients and professionals with ESMO and ESO. It was held in early December in Milan and it was a great success.

An initial plenary session on the Saturday included talks from professionals (Jean-Yves Blay, Paolo Casali, Paolo Dei Tos, Rolf Stahel) and patients (Kathy Oliver from IBTA and Francesco Di Lorenzo of ECPC). Questions came almost equally from patients and professionals in the audience.

Separate professional and patient sessions started after lunch on the Saturday. The patient programme focussed on Advocacy Issues in Rarer Cancers. The Saturday and Sunday sessions covered clinical issues – diagnosis, surgery, oncology and research. Individual clinicians and scientists came from the professional event to talk for 20-30 minutes on a defined topic and to answer questions. These sessions were lively with lots of issues and new ideas put forward by the speakers, and plenty of challenges from the advocate audience to keep them on topic and on their toes.

Meantime the professional session looked at some specific tumour types. Patients from the advocacy group attended sessions of personal interest, often raising questions which some of the professionals attending would have liked to ask but because they did not want to look ill-informed in front of their peers were too nervous to do so.

The advocacy research session was particularly lively when Dr Paolo Bruzzi (a statistician) and Dr Paolo Casali (medical oncologist) came together to talk about probability statistics in a joint session. At one point they put forward a hypothetical trial of intercessory prayer, examined how probability would affect its results, and how it would compare with a study of a more usual medical therapy. The subject of combination therapy was raised, which caught both scientific speakers unprepared. A humorous moment. It was followed by a stimulating talk from Eric Low OBE, a very experienced advocate, looking at the social, cultural, political and medical pressures to change research models and rely more on real world evidence.

The final session on Monday looked at advocacy issues, drawing on the long experience as an advocate which some members of the group had. The presentations included case studies of activities successfully undertaken by patient advocacy groups. These were listened to carefully by a couple of senior clinicians, sitting quietly at the back.

A closing short plenary summarised the weekend. These was agreement that it was a great success. Dr Casali, who led the event, deserves congratulations. The combined audience recognised the value of a parallel conference for clinical specialists and patient advocates which sets out to make maximum use of the skills and experiences of each group for the benefit of the other group. Both the planned and the unplanned interchange of audience members according to personal choice was truly valuable.

I look forward to seeing similar structures evolve in professional events everywhere. Let conference companies take note.

 

Time for Change

In early November I attended the NCRI Conference in Liverpool. I was offered a bursary by NCRI to cover my expenses and as I was speaking in a session on Quality of Life my delegate fee was waived.

It was an event which I enjoyed, as I have every other NCRI Conference since it started in 2005, although I missed a couple because I was having treatment at the time. It is a valuable way of maintaining contact with people across the spectrum of cancer research, scientists, clinicians and patients. Of course that social element is not the main reason for having the event, which includes a large amount of exhibition space. What is noticeable is that large pharma companies do not exhibit and that clinicians are few in number, those attending being ones with a significant research responsibility. Laboratory science dominates and NCRI has little to do with laboratory science. The main conference sessions are a bit formulaic – three ‘levels’ of plenary, symposium and parallel session, the latter with three or four speakers and the content mostly fixed months beforehand – leaving little opportunity to reflect ‘breaking’ news.

The ambition for joining everyone up, which Professor Sir Alex Markham expressed in 2005 (he was then NCRI Chair), has withered and it is a very one-sided event with token recognition of what NCRI actually does. The structures also fail to recognise that NCRI is not the NCRI of fifteen years ago. It is now an independent charity with its charity funder/members working together to develop cancer research at a policy and strategic level, not to fund it, educate its staff or evaluate the science.

One of the stresses is that the NCRI Conference is underwritten by Cancer Research UK, and all credit to them for carrying the venture forward. It is intriguing that as Cancer Research UK has started to bring its weight to bear on policy and strategic issues, very effectively, it has failed to ensure that these issues are represented properly in the NCRI Conference. They are trapped by the rigidity of programming structures which cannot respond to current events. CRUK, also to its credit, is a significant funder of NCRI.

It is becoming clear that things have changed and the Conference is overdue for a re-launch in new colours. It does not reflect NCRI’s activities or the needs of NCRI itself that could be met through having a proper national event to consider policy and its implementation, new initiatives (such as the current Survivorship partnership) and the steps being taken by member charities which could be better if joined up. Change is never easy, or comfortable, but it is needed. Clearly there will be funding issues and a re-launch would need to be carefully positioned.

A critical part of that positioning is the relationship with pharma. While the industry self-regulatory system fails to recognise that patients have a valued role to play in the design and development of research, pharma cannot fully participate in the way that it should. One of NCRI’s core principles is the involvement of ‘consumers’ – patients and carers. It is easy for NCRI to ensure that patients attending its conference are ‘accredited’ research representatives, whether they work with NCRI or with charities such as Cancer Research UK. The failure to recognise this by the pharmaceutical industry is an indictment of its shambolic, legalistic and patronising approach to patient involvement. Until that changes pharma attempts at patient involvement in research can only be tokenistic and trivial.

So there is much that needs change and as patients we can point it out and pressurise for it.

Roger Wilson is a member of the NCRI Consumer Forum and its longest serving consumer/patient. He was an NCRI Board Member 2004-2007 and closely involved with the first three NCRI Conferences. He is also a Member of Cancer Research UK.

Introducing PPI in Research – Purpose, Plan, Impact

Research is not an end in itself. Many researchers and their managers might think it is but involved patients should not be trapped into this mindset.

We are patients involved in research because we believe that we can help change things for the better. We believe that better treatments can be identified by good science. We believe that better care can result from good quality research. We believe that better processes and systems can be created. We cannot do this all by ourselves, we can only do it in partnership with the professionals. They may be managers, nurses, scientists, doctors, educators, inspectors, commissioners, policy makers or politicians. Research gives us the evidence to support change.

As an involved patient you should never lose sight of this important vision, we are in the business of transforming patient care for the better. Research is a means to that end, not an end in itself.

Sadly the myopic draft standards for patient and public involvement being assembled by NIHR do not address this purpose. The view presented is all inward to the research process, nothing abut what research can achieve to support change. NIHR have acknowledged that the standards are draft and will change. A positive step, I hope the next draft will address Purpose.

Involved patients must be asking questions about Purpose, asking why a research project is being undertaken? What are the issues to be faced in extending a successful study into routine clinical practice? Researchers without clinical experience may have limited horizons and no understanding about practicalities. Patients can bring that perspective, after all usually they will have been there. There is a second PPI in our debate – Purpose, Plan, Impact.

Plan brings me to a second point, a practice I would like to see which would encourage researchers to think outside their usual boxes. Every research project should have a plain language lay summary written at the outset, even before the project is approved. It states what the Plan is. It is part of the public face of the project, on its webpage, in any patient information and consent process, and in the final study report. It makes clear what the study will achieve, for patients. As a project progresses the summary would be regularly reviewed and updated so that everyone will know how it is progressing. The lay summary should also include the why and how of implementing positive results. That should be part of the Plan even if that is expressed only as ambition. That will be how Impact is delivered.

A lay summary used in this way would hardly affect research processes but it would change the focus of research quite subtly. The project would always be associated with its ambition, its anticipated Impact. It would have PPI – Purpose, Plan, Impact.

Let us hope that the next iteration of the NIHR Standards will capture some of this quality, will look outwards not inwards, will focus on Purpose, Plan, Impact.

We don’t need PPI Standards like these?

I have worked as a patient involved in research for over 15 years now. I have been involved in clinical/medical research at just about every level possible locally, nationally and internationally. I like to think I have helped things change and the responses I have had from the professionals would seem to confirm that.

It was interesting to find out about the development of a Patient and Public Involvement Standards process being developed by NIHR (the National Institute for Health Research) and INVOLVE, the national organisation for promoting involvement in research. There is an on-line questionnaire and a website. The objective is to provide guidance to organisations setting up a patient involvement process.

In all good faith I downloaded the documents and began to read. Dull, dull, dull. I have completed the on-line survey but there is so much more to be said, so much that was missing.

 It should sparkle with ambition. It doesn’t. In my experience there is always a danger of a standards process becoming pedestrian. This one is mechanistic and will create a bland environment where achieving the minimum standard is the highest ambition. It will open the way for tick-box micro-management of daily involvement activity and no-one will ever address the question “why are we doing this?”.

Patient and public involvement is about transformation. I know this is ambitious and hard to achieve but it can be done and standards, if we have to have them, must aim high.

Patient involvement demands Board level involvement, not disinterested oversight. Senior managers must identity involvement opportunities within their direct remit. If only junior managers are doing it PPI will wither and fail. Senior managers should be asking every day “where can I involve a patient/public member” not “why should I involve…”

How can we attract high achievers as PPI managers? Absolutely critical for the future.

How do we position taking the role of a PPI manager as a ‘must do’ role for future chief executives?

As I know very well involved lay people can be great at finding gaps which surprise the professionals and open them up. Working together transformation becomes possible. You cannot train for this. You have to find the right people and create or manoeuvre the situations where they can do it. These people can be inspired by the opportunity, they won’t be inspired by a tick-box life.

I welcome standards if they help widen involvement opportunities and create structures that enable and encourage beneficial change. This exercise, as it stands at the moment, is about the detail of daily transactions, not about transformation. It will drive patient involvement into the side-lines.

NIHR – please start again.

Consultation web-page

The Standards survey

Good start Sally, have another go!

I am a great admirer of Professor Sally Davies, our Chief Medical officer. She is an innovative and determined leader, who listens and sets direction after due consideration of the issues involved. Her enthusiasm for genetics and its potential is to be admired but the recent Generation Genome publication, which gained wide press coverage earlier in July because of its implications for cancer, is a flawed document. It is a great shame, its an opportunity missed

The 256 page report also has some sloppiness which betokens haste. Chapter 3 is followed by Chapter 9 which has been transposed into Chapter 4. Chapter 9 really is Chapter 9 and not to be mistaken for the earlier Chapter 9 which is now Chapter 4. Confused – so was I until I worked it out. However this is a trivial slip.

The report is a fascinating overview of genetic medicine covering a lot more than cancer. I learned a lot from it – indeed I have not finished reading it yet. I am only competent to comment on the cancer chapter and not about the science.

It presents a one-eyed view of cancer treatment. The assumption that genetic science will be the only treatment that is needed for cancer comes across strongly. The word ‘surgery’ is only mentioned once yet surgery (plus adjuvant therapy) currently cures more than 50% of cancer patients and if we diagnosed them earlier it could be many more. No mention of these important self-evident truths. There is a real-life context for genetic cancer medicine.

A lot is made of ‘big data’ and its potential to impact on clinical decision-making. This is true regardless of genetic information, although such information will undoubtedly add immensely to the potential. The paper alludes to being able to select patients for treatment but does not consider the moral and ethical issues of empowering computers to make individualised assumptions which are used to deny treatment.

If the intention was to create the idea that surgery and radiotherapy (plus all the other modes of treatment) will be redundant in the future and that cancer treatment will solely rely on costly designer drugs, the chapter succeeds. It talks about personalised medicine as if that is the exclusive characteristic of new generation drugs. In my experience surgery is the most personalised medicine there is. Someone needs to cut out the hype and wake-up to the real life context – Dame Sally please take note. Case Study 1 describes a colon cancer patient with inoperable liver metastases and how cetuximab reduced them to become operable. There is no mention that the patient would have had surgery for his primary tumour and that without that intervention treating the metastases was inappropriate. Surgery to remove the residual metastases is mentioned – the only use of the word surgery in the whole chapter. Even Case Study 1 seems to have been distorted to support the idea! And there isn’t a Case Study 2.

This over enthusiasm and lack of context does a dis-service to what would otherwise be a useful paper. It has some relevance to what is happening today and clearly points to a lot of tremendous scientific and clinical advances. It will have an impact for surgery and radiotherapy, no mention of that. The tremendous advances in imaging and the relationship with that work is ignored. It focuses on drugs alone and then makes no mention of the fact that today there are more known mutations than there are drugs to treat them.

Genetics will undoubtedly create change. There will be new and valued diagnostic information although the ability to act on it will develop over time. Curative surgery plus radiotherapy, curing most patients, will change slowly as evidence to support change appears. There will be new adjuvant therapies and maintenance therapies. The precision medicine impact will be largely to the way advanced disease is treated, when successive metastatic events introduce new mutations which can be identified though techniques such as liquid biopsy. This will deliver patient benefit. Patients currently on a path to end-of-life care will have that pathway extended, although at largely unknown cost.

We need to have a balanced and inclusive view rooted in our multidisciplinary world. Patients need a range of skills and knowledge to support their survival, or their pathway to dying, that must be reflected.

Good start Sally, have another go.

Download Generation Genome (Government website)

Brexit – how to damage science and healthcare

Brexit seems to dominate everything at the moment and the personality cult of Theresa May is also being thrust down our throats in a strong and stable manner.

Last week I was in Brussels for the EORTC Quality of Life conference, the first it has held for about four years. The question of how Brexit will affect EORTC was raised and quickly answered by Denis Lacombe, the EORTC Director-General. It won’t affect it at all because EORTC is not an EU institution. EORTC is a Belgian charity with a wide range of funding sources, including Cancer Research UK, and its Board has stated clearly that its partnerships will be unaffected.

It raises the same question about other cancer research initiatives, some of which have long term EU funding and involve UK universities and research centres. Their fate will be down to the much anticipated negotiations which, like the previous longest running speculation in history, the Spanish Armada, is being talked up by a right wing media heavily biased towards disaster. The threat is very real. We have EuroEwing and EuroSarc as two sarcoma research projects funded by the European Commission and with a wide partnership. EuroEwing is led by University College London, Oxford University is a prominent participant in EuroSarc. There are many other medical research initiatives funded similarly. What will their fates be?

On the wider subject of scientific research I cannot see any way that Brexit will not be damaging. Unlike the Spanish Armada, which failed to invade, the EU will withdraw to cause significant damage. Mitigating the likely damage and finding ways of ensuring that top quality young scientists will continue to want to pursue their careers in the UK is critical.

Drug regulation is another area. The UK must continue to be a partner in the European Medicines Agency (EMA). Running a parallel approvals process just for the UK would be incredibly costly, we don’t have the skills in the right numbers to handle it, delays would be inevitable, the quality would diminish, and patients would be denied new treatments even when they have been shown to be safe, beneficial and cost effective.

Failing to recognise such hard realities seems to be part of the gaming which is going on.

Sad to hear Nick Clegg on Radio 4 explaining the approach he thought should have been adopted. The so-called soft-Brexit would have aimed to draw European leaders into identifying and discussing areas of mutual benefit early on, with the tougher discussions about trade and migration being drawn out during an established context of working together for mutual benefit. So sensible, so sad that opportunity was not taken.

My final thought is that the 27% of the population who voted to leave the EU would not have voted for poorer healthcare. They didn’t of course – they voted for a brazen lie, £350m a week going into the NHS.

Shall we ever live this down?

In the meantime I enjoy working with EORTC and my presentations at the EORTC QoL Conference are on-line.

Pathway to Patient Benefit 

Survival – diagnosis or lifestyle