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Time for a Patient Revolution

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by Simon McGrath



'Let the Patient Revolution begin'. A militant cry from those difficult, demanding ME/CFS patients unwilling to listen to doctors and researchers who only have patients' best interests at heart? No, this dramatic call comes from a pillar of the medical establishment, the British Medical Journal (BMJ). Its recent editorial argues that the healthcare system as a whole is, far from being benign, actually badly broken and can only be fixed by an active partnership with patients:


[Most patients face] tests and treatments whose merits are hyped and harms underplayed...

Practice is informed by an incomplete research base bedevilled with selection and reporting bias, and at worst fraud. The preservation of institutional bureaucracies, as well as professional and commercial vested interests, have consistently trumped the interests of patients. The healthcare industrial complex stands accused of losing its moral purpose...

How better to [fix this] than to enlist the help of those whom the system is supposed to serve—patients?

BMJ Editorial: Let the patient revolution begin, May 2013


The BMJ may not have had ME/CFS in mind specifically, but their comment "Far more than clinicians, patients understand the realities of their condition, the impact of disease and its treatment on their lives, and how services could be better designed to help them" sums up the ME/CFS predicament perfectly.

Some patients have good constructive relationships with their physicians - Dan Peterson's patients are practically queuing up to praise him. Yet many have had nightmares, with doctors who want to dictate to patients without listening to the reality of their condition, and who sometimes seem to think this illness isn't much more than an attitude problem. It varies a lot - I've experienced both sides of the coin myself - but there are way too many examples of patients having horrific experiences at the hands of the health service. And for those severely-affected, there is often nothing on offer at all.

Things should be changing in the UK, at least in theory. The Government's new Health and Social Care Act aims for there to be “no decision about me, without me” for patients and their own care. How well these high ideals translate into better patient care remains to be seen.


'Healthcare won’t get better until patients play a leading role in fixing it'

That quote comes from the BMJ editorial, again - but, of course, patients across diseases have been calling for change for years. One of the leading advocates for putting patients centre-stage is e-Patient Dave, (Dave deBronkart) who says "The most underutilized resource in all of healthcare is the patient". While the BMJ said "Patient engagement is seen as a way to help health systems become sustainable. Some have argued that it is the “blockbuster drug of the century” and will deliver equivalent dividends."

Patients Rising: TED talk from e-Patient Dave
http://embed.ted.com/talks/dave_debronkart_meet_e_patient_dave.html



The e-patient (and how the web changed everything)

Dave says that a key figure in the development of patients who were partners in their own treatment was Tom Ferguson, medical editor of the hippy Whole Earth Catalogue. Tom pointed out in the 1970s that most healthcare consists of healthy people looking after themselves, but somehow when people become ill, their healthcare is all down to someone else. So he coined the word e-patient, who he called Equipped, Enabled, Empowered and Engaged (to which others have added Equals and Expert), to describe patients actively engaged in treating their disease.

Then the web changed everything - Dave emphasised how the Internet lets patients not only find information but also connect with one another. This makes new things possible, including in his case patients finding doctors in his region that were experienced in using a new and aggressive treatment for his terminal-diagnosed cancer. The patients said it probably wouldn't work, but it might - and in his case it did (see his BMJ article: "How the e-patient community helped save my life"). This isn't to suggest that there is a miracle cure for ME/CFS out there waiting to be found online, but it does show how online patients can provide well-informed, highly relevant information that wouldn't otherwise be available. The BMJ too emphasise the value of patient communities:

Online patient communities where patients meet, talk, support, inform, and coach each other are empowering patients... They also provide a rich and as yet largely untapped learning resource for health professionals. Examples include [not Phoenix Rising, sadly!] There are salutary lessons in the gulf between conversations in the clinic and the concerns patients share with their peers. [BMJ editorial]

Unfortunately, not all doctors see patient forums so positively.


Clinics that give patients what they want?

As the BMJ said, "Far more than clinicians, patients understand the realities of their condition and how services could be better designed to help them" and this is probably nowhere more true than for ME/CFS.

The UK Government says the 'no decision about me without me' approach also applies to the design of health and social care services. Firestormm, for example, found the new GP Commissioners in Cornwall were willing to listen to patients when the NHS CFS/ME Service was under threat in 2011/12, and that these talks led to the preservation of a much needed service and actually saw funding increase: I'm hoping he'll post more in the comments section. However, it is early days for the new system of GP Commissioners, so it's not yet clear if this new initiative from the Government - to give decision-making and funding responsibility to local GP experts - will translate to better, more responsive ME/CFS services right across the country.


Putting patients at the heart of research



As well as medical care itself, medical research needs to change too, so that it really does serve the interests of patients. The United States government has set up a new agency, Patient-Centred Outcomes Research Institute (PCORI), to focus on outcomes that matter most to patients. This is serious work: last year they had a budget of $150m. This year both CFIDS and the Open Medicine Institute (OMI) are applying for a share of $12 million to establish patient networks of individuals who (choose to) provide their own clinical and self-reported data for research studies that promise to improve outcomes for patients. Phoenix Rising is supporting the OMI application, so if it's successful we could be part of that network, helping to power better research. More about the OMI initiative below.

In the UK, groups of patients, carers, and clinicians are focusing on the questions about treatment outcomes - good and bad - that researchers need to answer. The results is DUETS, a database of uncertainties about the effects of treatment. Unfortunately, such an enlightened approach has yet to reach ME/CFS, as was shown by the world's largest CFS clinical trial, the £5 million PACE study, which defined success and failure without consulting patients.

Not everyone wants to collaborate with patients…
The PACE Trial’s recent paper claimed that 22% of patients ‘recovered’ with CBT or Graded Exercise (compared with 7% without). However, they had abandoned their original protocol definition of recovery and created a new version with much looser criteria. To give an idea of how far-fetched some of the new ‘recovery’ criteria are, 13% of patients met the fatigue or function ‘recovery’ criteria at the start of the trial – while simultaneously meeting criteria for ‘severe and disabling fatigue’. And a quarter of patients seen in wider clinical practice had physical function scores that met PACE recovery criteria.

Patients were not consulted about what should define recovery, not were participants asked if they considered themselves recovered. Surely the prime arbiters of what counts as recovery should be patients, who live the real-world consequences of the illness?

When it came to measuring treatment ‘Harms’, the PACE trial did go further in collecting data than any previous study of CBT and graded exercise. But they revised the original protocol definition of ‘Harms’, making it harder to for problems to count as ‘harm’, and made it technically almost impossible for anyone to deteriorate seriously in the second 6 months of the trial.

As well as ‘no decision about me without me’, perhaps we also need a commitment from the Government there should be ‘no research about me, without me‘. There is progress here, and the National Institute of Health Research, one of the biggest UK funding bodies for clinical research, now actively encourages researchers to involved patients in all stages of research, as partners rather than simply as trial participants.

It's also worth noting that ME/CFS patient surveys - based on patients receiving normal clinical services rather than the highly controlled therapy of research trials - consistently find high levels of adverse reactions with CBT and graded exercise. This information hasn't always been taken very seriously by researchers and clinicians.

Elsewhere, The Cochrane Collaboration has raised standards in medicines by producing systematic reviews of evidence on a topic, so that doctors can see the whole picture rather than relying on cherry-picked studies for information. Every Cochrane Review has a plain language summary aimed at patients, and they've gone further with the creation of the Cochrane Consumer Network, ccnet, that involves patients and patient advocates in preparing reviews - to make sure that Reviews address the issues that matter most to patients. Sadly there is no patient involvement in the forthcoming review on exercise therapy for CFS. There will, though, be an opportunity for patients to publish comments on the review - and hopefully patients will be involved in the future Reviews.

Other organisations show new signs of being willing to listen too. The recent FDA workshop gave over much of the first day to patients talking about their experiences. It quickly became clear that many at the FDA had no idea of the level of suffering of ME/CFS patients, but the often-moving testimony from sufferers did sem to make a difference.


Give us our data!

It's pretty hard to be an engaged e-patient if you can't even read the research, and most CFS papers are currently locked away behind a paywall. Ironically, even the 'Let the patient revolution begin' BMJ editorial initially couldn't be read by patients as it was paywalled, but credit is due to the BMJ who made it open access when the problem was pointed out to them. Nonetheless, its series of patient essays, including e-patient Dave's, remain paywalled despite their obvious value for patient engagement.

Fortunately, most new publicly funded research both in the UK and the US has to be made open access, though compliance is not enforced and that still leaves decades-worth of research locked away from patients. There is also a new movement for 'Open Data' that believes all scientific data (suitably anonymised as needed to protect patient confidentiality) should be available for anyone to analyse, even patients. Not all researchers are keen on having their data scrutinised, but the UK government is backing calls from the Wellcome Trust to make research funded by the government and charities freely available.


Patients doing it for themselves

Patients are increasingly becoming a driving force in research, rather than simply being consumers or participants:


Crowd-sourcing to speed up research

The Open Medicine Institute's OpenMedNet gives patients the chance to share their clinical data, biological samples or both - sharing as much or as little as they wish with researchers who will suddenly have the chance to conduct studies with thousands of patients. There are plans to let patients add data from devices such as Fitbit that monitor activity levels and sleep, to give researchers an unparalleled opportunity to study patients 'in the wild' rather than just in the lab. PatientsLikeMe is another site that lets patients network and share data with other patients and researchers, though not specifically for ME/CFS.


Crowd-funding too

Patients aren't just giving researchers data now, they are starting to directly fund research themselves too. Maria Gjerpe's incredible MEandYou initiative raised $430,000 in 90 days for the planned Norwegian multi-centre trial of the potential ME/CFS drug Rituximab. But MEandYou achieved far more than that. The fact that patients were resorting to funding their own research generated huge media and political interest, especially in Norway where, as Maria says, it changed attitudes and helped prompt the Norwegian Research council into funding a large chunk of the Rituximab trial, having earlier turned it down.


Crowdfunding is catching on: Ryan Prior turned to patients to fund his 'Blue ribbon' documentary exposing the terrible neglect of ME/CFS - and reached the $12,000 target in half the planned 36 days.


Patients Rising

There are a raft of opportunities coming together that could help tackle the major problems faced by ME/CFS patients. The medical establishment is finally beginning to wake up to the need for radical change, no doubt prompted by years of advocacy from patients pointing out that their needs are being ignored in healthcare and research. And there is recognition too that patients are central to fixing the system. Legislation in the UK will, at least in theory, give patients a much greater say. Research is being opened up to patients, while new technology and a can-do spirit from people like the Open Medicine Institute creates brand new ways for patients to contribute.

Not everyone will welcome a patient revolution, and I suspect that the medical establishment will resist more when it comes to ME/CFS than with most other diseases. It's crucial that ME/CFS patients keep up the pressure and exploit these new opportunities, but I believe there has never been such a promising time to get a better deal for ME/CFS patients.



Credits: Thanks to OCAL at clickr.com for the revolutionary woman icon, and to those who contributed ideas including Esther12 (who set up the thread that sparked this off) and Tom Kindlon.



Simon McGrath tweets about ME/CFS Research Follow @sjmnotes




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Comments

We'll never get a ME/CFS patient revolution going by insisting that patient selection doesn't matter, and nothing can be proven.

Those are the very words ME/CFS patients are struggling to overcome.
Nobody has said that patient selection for scientific studies does not matter. Please reread the prior posts. Patient selection is important for studies into ME. So is the selection of controls, and decisions made about standards of testing.

Selection bias is not so important in an OMI style database. Its the studies that determine criteria, create matched controls etc.

Its the sad reality that doctors being unable to handle uncertainty in medicine and diagnosis that makes them want certainty. The only "certain" diagnosis for ME in many doctors eyes is a psychosomatic one. This is dangerous. Medicine needs to embrace uncertainty, or these mistakes will be driven by their need for certainty. which makes them vulnerable to latching on to half-baked theories such as that deconditioning, depression or the wrong ideas about their illness can cause ME, or actually be ME. Once they have the wrong ideas firmly entrenched, then work committments, confirmation bias and cognitive dissonance make looking at contrary data difficult. It gets dismissed. Why should they look at data about ME? They already know its psychosomatic, or not a real illness or whatever their view is.

What needs to happen is that false hypotheses, false claims about ME, are disproved. Then we have to find a way to break through the political and economic structures that make current BPS models so appealing.

Meanwhile studies like the phase 3 clinical trials into Rituximab may yet present us with a reliable cure for many of us, and a treatment for most. At that point we will need to push for treatment, and lobby for government support in every country and acceptance by the insurance industry. It was patient demand that got antibiotics accepted for use in peptic ulcers, the medical profession resisted it.

Other studies include possible biomarkers, novel pathogens etc. Lots of interesting research may come out in the next few years.
 
Meanwhile studies like the phase 3 clinical trials into Rituximab may yet present us with a reliable cure for many of us, and a treatment for most. At that point we will need to push for treatment, and lobby for government support in every country and acceptance by the insurance industry. It was patient demand that got antibiotics accepted for use in peptic ulcers, the medical profession resisted it.

Other studies include possible biomarkers, novel pathogens etc. Lots of interesting research may come out in the next few years.
I agree as long as no compulsion is brought to bear on patients to agree to treatments (let's use Rituximab as a theoretical example) or else lose welfare benefits.

Few, if any, new medicines are both safe and effective for all sufferers of a given illness, and different treatments are likely to benefit different patients, as indeed is currently accepted for things like hypertension. Hopefully this kind of level of uncertainty over which treatment is suitable for which patient, which most doctors acknowledge, will also be acceptable to them with regard to treatments for ME, with the patient being the final decision maker after being given all necessary information.
 
Yes MeSci , compelling people to comply in the call of it being in their own good is legitimization of authoritative control of so very much. Its a very bad idea. However patients should be given the evidence and the option. I am not sure that in the case of Rituximab it will be a problem though - its very expensive. I think it more likely they will try to disuade people from using it.

Rituximab currently has a fail rate of 30% (though I am sure it is now less than that, the actual figure is not public). So up to 30% of patients who try Rituximab are taking a risk on a drug that can cause sudden death, or viral infections from viruses that only attack the severely immune compromised, and so on. Nobody should be compelled to take such risks.

What we really need is biomarkers that predict a very high level of success. I hope they can come out of the phase 3 study, or at least some study in the next five years, which is my expected time frame before we have an answer on whether Rituximab is highly useful as a treatment or not.

One thing that is a big concern with many of us is we react very badly to so many things. Rituximab is a class of drugs that induces massive allergic reactions anyway. So how can somone who is highly drug intolerant cope with using Rituximab? Its a concern, and nobody has real answers yet.
 
Newton's law made predictions which were shown to be wrong. Under standard conditions on Earth its accurate enough that its still used, but thats because its a close approximation. Its not correct.
The fact that it's still accurate enough to be used to put a man on the moon and to build the human world is the point; the Law holds in most circumstances, which is all science Law claims to do. That's different from, say, the notion that the earth is flat, which could be said to be wrong, debunked or disproved - as you were suggesting applies to Newton's Law of gravity.

Anyway dont' know quite how we got from 'A Patient Revoulution' - how patients need to be centre-stage for the good of both healthcare and research - to Newton's Law of gravity and whether or not science can prove anything. How about pursuing this instead on a new thread?

Meanwhile, I thought it timely that there is going to be a research study into the value of Phoenix Rising, given this in the Patient Revolution blog:

The BMJ too emphasise the value of patient communities:
Online patient communities where patients meet, talk, support, inform, and coach each other are empowering patients... They also provide a rich and as yet largely untapped learning resource for health professionals. Examples include [not Phoenix Rising, sadly!] There are salutary lessons in the gulf between conversations in the clinic and the concerns patients share with their peers. [BMJ editorial]
 
For this biobank, proper selection is critical.


----------------------------------------------------------------------------
THE OMI-MERIT INITIATIVE—CHANGING THE GAME FOR ME/CFS
OMI-MERIT (ME Roundtable on Immunology and Treatment) is a strategic initiative of OMI and its collaborators to bring together leading clinicians and researchers to tackle this debilitating but underserved disease. The MERIT group is focused on developing and applying a multi-factorial approach to the discovery of new diagnostic and treatment solutions for ME/CFS.

OMI-MERIT Priority Projects


An International Neuro Registry and Biobank
Goal: Supporting and expanding the largest and most comprehensive longitudinal ME/CFS information source for research and collaboration will be the result of this project. We will collect longitudinal data and biological specimens from ME/CFS patients and controls, and characterize the ME/CFS population by patient symptoms and laboratory and molecular profiles through crowd-sourced informatics and cutting-edge tools in immunology, genomics, and molecular biology. Comprehensive, standardized sampling will include blood, cerebrospinal fluid (CSF), urine, stool, brain/CNS, and other tissues. Samples will be available for additional studies in the MERIT list and beyond.
Importance: There has been no large-scale, chronologic characterization effort across the ME/CFS population. The Registry and Biobank will help establish clinical and biologic clusters in the population, paving the way for diagnostic biomarkers and cluster-specific treatments. In addition, this will provide a community resource for patients and is central to additional collaborative projects.
 
Erik Johnson

If you use the quote function at the end of the bar above it will make posts easier to read. It will save the "head-scratching" factor of trying to figure out which part is yours and which quoted.

Thanks,
Sushi
 
Patients often drive change. According to one medical conference report that I blogged on, it was patients who made the medical profession use antibiotics to treat peptic ulcers. They forced the issue. When the science changes, when a treatment is available, ultimately its we who have to ensure the change goes through, especially given the huge resistance we have already faced for even minor acknowledgement of research into ME.
 
Patients often drive change. According to one medical conference report that I blogged on, it was patients who made the medical profession use antibiotics to treat peptic ulcers. They forced the issue. When the science changes, when a treatment is available, ultimately its we who have to ensure the change goes through, especially given the huge resistance we have already faced for even minor acknowledgement of research into ME.

This is what Dr. Munos was presenting at the FDA meeting. here

“We need more and better data. We need tools to go along with the data. We need partners, we need money and lastly, we need leadership and passion. I should stress we have quite a bit of that already, but we need to, [perhaps], connect it a little bit better than it is connected today.”

Our community already have the patient registry in America for CFS, but he felt it would be better if this data could be collected from sources across the world. This would lead to a much broader and more variable array of information, producing a better understanding of the disease differentials. Note: this is something that might be achieved by the OMI-MERITinitiative and their International Neuro Registry and Biobank.

"If you think about the scientific revolutions in history, they’ve been driven by one thing: the availability of data. From Copernicus to quantum mechanics: it is data that drives innovation."
We could just sit back ad complain that nothing is being done, that there is a lack of funding, that the research out there is flawed or we can take matters in our own hands and advocate for change.
 
One thing that is a big concern with many of us is we react very badly to so many things. Rituximab is a class of drugs that induces massive allergic reactions anyway. So how can somone who is highly drug intolerant cope with using Rituximab? Its a concern, and nobody has real answers yet.
I believe it is often given with a quite high dose antihistamine premed given by IV.
 
Patients often drive change. According to one medical conference report that I blogged on, it was patients who made the medical profession use antibiotics to treat peptic ulcers. They forced the issue. When the science changes, when a treatment is available, ultimately its we who have to ensure the change goes through, especially given the huge resistance we have already faced for even minor acknowledgement of research into ME.
The drug companies have cottoned onto the idea of patient power and are funding groups that try to get drugs approved.
 
In the case of drug companies they were funding things so that antibiotics would not be used for peptic ulcers. The antacid industry was huge. At least in our case there is no established market for highly useful drugs. Currently nobody is going to lose a fortune if some other drug is used.
 
Update on CFIDS and OMI proposals re $1 million grants for ME/CFS patient-powered research databases, by Jennie Spotilla:
Occupy CFS » Need to Reality

Jennie points out that CFIDS are partnering with PatientsLikeME, an organisation that already allows patients with other illnesses to share data with researchers:
my Patient Revolution blog said:
Crowd-sourcing to speed up research

The Open Medicine Institute's OpenMedNet gives patients the chance to share their clinical data, biological samples or both - sharing as much or as little as they wish with researchers who will suddenly have the chance to conduct studies with thousands of patients. There are plans to let patients add data from devices such as Fitbit that monitor activity levels and sleep, to give researchers an unparalleled opportunity to study patients 'in the wild' rather than just in the lab. PatientsLikeMe is another site that lets patients network and share data with other patients and researchers, though not specifically for ME/CFS.
Conclusion of her new blog
Jennie Spotilla said:
So what’s next? Full proposals for PCORI [Patient Centered Outcome Research Centre, with $350m budget] funding are due September 27, 2013 and funding would begin in January 2014. Let’s hope that at least one of the ME/CFS proposals is successful. One million dollars would go a long way towards building what Munos said we needed: a patient-powered network of data that can be shared with researchers and form the basis of treatment trials and biomarker identification. If there is any disease cohort that needs this kind of jumpstart funding, it is the ME/CFS community.
 
Finally, and most importantly, clinicians and patients should complain to trialists and publishers if trials are published with inadequate descriptions of their interventions. Clinicians and patients are the last line of defence against poor reporting.
From:
Descriptions of non-pharmacological interventions in clinical trials.BMJ. 2013 Sep 11;347:f5212. doi: 10.1136/bmj.f5212.

Cook A, Douet L, Boutron I.
Source

Wessex Institute, University of Southampton, Southampton SO16 7NS, UK.
----
Shows a recognition of the value of patients' input.
 
30 January 2014
Editor's Choice
Towards the patient revolution
Fiona Godlee, editor, BMJ

fgodlee@bmj.com

In an editorial last year we called for a patient revolution (doi:10.1136/bmj.f2614). We said that patients, far more than clinicians, understand the impact of disease and treatment. We said that clinicians and patients therefore needed to work in partnership if we are to improve healthcare. We talked about corruption in the mission of healthcare and the need to challenge deeply ingrained practices and behaviours. We said that we wanted to develop a strategy for patient partnership at the BMJ, that we planned to establish a panel of patients and clinicians to help us with this work—and that we would report back on progress.

Well, last week we held our first patient partnership workshop, and as Tessa Richards explains in her blog (bmj.com/blogs) we were humbled and inspired by the enthusiasm of the patients and patient advocates who came to help us advance the quest to make patient partnership a reality.

We expected to be challenged by the panel, and we were. Was this just eye candy for the BMJ, we were asked, a form of tokenism to help the journal look and feel good? Or were we serious in our commitment to change things at the BMJ so that we can campaign for a cultural shift in medicine? I hope we managed to convince those present that we are indeed serious.

We have made a small start by adding expert patients to the peer review process for selected research papers. And we plan to publish our draft strategy on patient partnership in the next three months. I expect this will incorporate many of the recommendations from the workshop. These included having a patient voice on all the committees that make decisions about the BMJ’s content and strategy, asking authors of research articles to explain how they involved patients in the design of their study, and having an expert patient as a coauthor on every clinical review.

Our hope is that these changes to our own policies and practice will provide us with a sturdier platform from which to advocate change. Our panel wants the BMJ to campaign for patients to be equal partners in the design and delivery of healthcare and in clinical research and to tackle the power imbalance between patients and the "medical industrial complex."

I wonder, though, whether our main challenge will be just keeping up with the speed of change. As Paul Wicks and colleagues explain (doi:10.1136/bmj.g368), when it comes to clinical trials some patients are already well ahead of the game. By sharing their own data and analyses through social media, trial participants are breaking the cultural and actual codes of clinical trials. This "disobedience" shows that participants know they are statistically and literally the "power" in trials. Wicks and colleagues, all from the patient network PatientsLikeMe, warn of tragic outcomes unless we forge a new social contract. "With the new tools at their disposal patients will hold us all accountable in new and necessary ways," they conclude.

Cite this as: BMJ 2014;348:g1209
 
These included having a patient voice on all the committees that make decisions about the BMJ’s content and strategy, asking authors of research articles to explain how they involved patients in the design of their study, and having an expert patient as a coauthor on every clinical review.
If I'm reading this correctly, this refers to the writers of reviews, rather than reviewers appointed by the journal. This could be interesting in terms of CFS when the CBT school have organised reviews which have been published by the BMJ group e.g. I recall a review done by a KCL team.
 
We should keep an eye on what the BMJ are doing.
I didn't know that they were planning to hold a 'patient partnership workshop'.
And I didn't know that they have added "expert patients to the peer review process for selected research papers."
And we should find out about their plans for "having a patient voice on all the committees that make decisions about the BMJ’s content and strategy."
 
This is the BMJ blog that is referenced in the editorial that @Firestormm posted above...

Tessa Richards: The rise and reach of expert patients
17 Jan, 14 | by BMJ
http://blogs.bmj.com/bmj/2014/01/17/tessa-richards-the-rise-and-reach-of-expert-patients/

As the BMJ gears up for its first patient partnership workshop next week we have been humbled and inspired by the enthusiasm of the many patients and patient advocates who have come forward to work with us. We see their insights, and those of an army of patients who we should all listen to, as crucial to developing a strategy to help doctors, and the health systems in which they work realise the challenging goal of partnership.

Our initial steps include patient peer review of research papers (randomised controlled trials) and some analysis papers, and we are actively seeking patients to join our growing database of patient reviewers to help us do this. We will also be getting the patient’s voice into the journal more often and seeking their input into educational articles.

Patients bring an expertise to the table that can’t be found in the corridors of academia or the manager’s office. Many of those who live with chronic disease slowly and painfully acquire knowledge which over time exceeds that of many of the health professionals they intermittently meet. A recent, much tweeted (553 times) paper in BMJ Open entitled, “What happens when patients know more than their doctor?” explores this issue.