BMJ: Let the patient revoloution begin (lots of stuff like this about at the moment, here's a eg).

[Esther12]

It's meant to be behind a paywall... but so what. It would be funny to have them complain about their article on patient engagement being made available to patients.

I find all this stuff pretty funny given the way in which the BMJ has treated CFS patients critical of the misleading claims made about the efficacy of CBT for CFS (the BMJ reported the result from the PACE trial by claiming "Less than a third of patients were cured by either treatment (30% (44/148) after CBT..." they then went on to complain about militant patient anger yadda-yadda, without ever issuing a correction).

http://www.bmj.com/content/346/bmj.f2614
Let the patient revolution begin
BMJ 2013; 346 doi: http://dx.doi.org/10.1136/bmj.f2614 (Published 14 May 2013)
Cite this as: BMJ 2013;346:f2614

1. Tessa Richards, analysis editor1,
2. Victor M Montori, professor2,
3. Fiona Godlee, editor in chief1,
4. Peter Lapsley, patient editor1,
5. Dave Paul, secretary of the patient advisory group 2

Author Affiliations

1. trichards@bmj.com

Patients can improve healthcare: it’s time to take partnership seriously
A hundred years ago George Bernard Shaw lambasted the medical profession as a conspiracy against the laity.1 Today, disease and doctor centric health systems that are costly, wasteful, fragmented, and too often uncaring are provoking similar ire.2
Despite the best intentions and undoubted skill of many who work within healthcare, access to care, and its quality, vary markedly, and most people in rich countries access a confusing smorgasbord of tests and treatments whose merits are hyped and harms underplayed.3 Patients lack information on practice variation, the effectiveness of their care, and the extent of medical uncertainty. Practice is informed by an incomplete research base bedevilled with selection and reporting bias,4 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.5 This corruption in the mission of healthcare requires urgent correction. And how better to do this than to enlist the help of those whom the system is supposed to serve—patients? 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.6
Clinicians and patients need to work in partnership if we are to improve healthcare and challenge deeply ingrained practices and behaviours. Doing this won't be easy for either side after eons of paternalism, and some patients may continue to prefer their doctor to take the lead role in decision making. But good examples are showing the way. The Choosing Wisely initiative in the US (www.choosingwisely.org/) brings patients and doctors together to identify and reduce the use of unwarranted and ineffective interventions. Discussion groups of patients, carers, and clinicians led by the James Lind Alliance in the United Kingdom, and the Patient Centered Outcomes Research Institute in the United States, are shedding light on the mismatch between the questions that patients and doctors want answers to and the ones that researchers are investigating. Joint discussions have helped build a database of uncertainties about the effects of treatment (www.library.nhs.uk/duets/).
Patients and doctors are also collaborating to design new services and information systems.7 Leaders in innovative partnership include ReshapeHealth (www.radboudreshapecenter.com), which is pioneering patient led and “crowdfunded” research. A growing number of healthcare organisations are giving patients access to, and in some cases control over, their medical records.7 At the Mayo Clinic a free app gives patients full access to their medical notes, pathology reports, and radiology reports; and because a shift in power depends on establishing a common lexicon, work is under way to reduce the medical jargon in these resources. There are guides on why and how to engage with patients (http://epatientdave.com/let-patients-help/),8 and some patients are already acting as “sherpas” to promote joint working,6 including members of the participatory medicine movement (http://participatorymedicine.org).
Online patient communities where patients meet, talk, support, inform, and coach each other are empowering patients (although it is important to note who sponsors them).9 They also provide a rich and as yet largely untapped learning resource for health professionals. Examples include healthunlocked.com, healthtalkonline, rawarrior.com, and cancergrace.org (www.bmj.com/podcast/2013/04/29/dying-patients-hospital-e-patients-online). There are salutary lessons in the gulf between conversations in the clinic and the concerns patients share with their peers.
Advocacy for patient engagement in the US, UK, mainland Europe, and well beyond is driven largely by the belief, backed by some evidence, that engaging patients will reduce healthcare costs through the avoidance of unnecessary investigation and treatment. 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.10
But partnering with patients must be seen as far more than the latest route to healthcare efficiency. It’s about a fundamental shift in the power structure in healthcare and a renewed focus on the core mission of health systems. We need to accept that expertise in health and illness lies outside as much as inside medical circles and that working alongside patients, their families, local communities, civil society organisations, and experts in other sectors is essential to improving health. Revolution requires joint participation in the design and implementation of new policies, systems, and services, as well as in clinical decision making.
Much remains to be discovered, evaluated, and implemented to achieve meaningful partnership with patients. There is also a need to embed shared decision making, based on individual patients’ preferences11 and goals,12 into routine practice. At an open meeting in June in Peru (www.isdm2013.org), which can be followed through social media, the shared decision making community will further global debate on the latest thinking and research.
For its part the BMJ is stepping up its commitment to patient partnership. We already have an online collection of articles on shared decision making and a growing library of patient journey articles.13 Now we want to develop a strategy for patient partnership that will be reflected across the entire journal. We plan to establish a panel of patients and clinicians to help us with this work and will report back on our progress.
It has been said that healthcare won’t get better until patients play a leading role in fixing it.14 We agree and look forward to helping drive the patient revolution on.
Notes

Cite this as: BMJ 2013;346:f2614
Footnotes

• Personal view, doi:10.1136/bmj.f2901
• Analysis, doi:10.1136/bmj.f2510
• Competing interests: We have read and understood the BMJ Group policy on declaration of interests and declare the following interests: FG, TR, PL, and DP have none; VMM is chair of the organising committee, 7th International Shared Decision Making Conference, Lima, Peru.
• Provenance and peer review: Commissioned; not externally peer reviewed.

References

1. ↵
   Shaw GB. The doctor’s dilemma: a tragedy. 1st World Library.
2. ↵
   Fung B. How the US health-care system wastes $750 billion annually. Atlantic2012 Sept 7. www.theatlantic.com/health/archive/2012/09/how-the-us-health-care-system-wastes750-billionannually/262106/.
3. ↵
   Moynihan R, Glaziou P, Woloshin S, Schwartz L, Santa J, Godlee G. Winding back the harms of too much medicine. BMJ2013;346:f1271.
   Check LinkSource for full textFREE Full Text
4. ↵
   Chalmers I, Glaziou P. Avoidable waste in the production and reporting of research evidence. Lancet2009;374;86-9.
5. ↵
   Smythe C. NHS urged to find its “moral purpose.” Times 2013 March 8. www.thetimes.co.uk/tto/health/news/article3708313.ece.
6. ↵
   Young K. Doctors’ understanding of rheumatoid disease does not align with patients’ experiences. BMJ2013;346:f2901.
   Check LinkSource for full textFREE Full Text
7. ↵
   Davies P. Should patients be able to control their own records? BMJ 2012;345:e4905.
   Check LinkSource for full textFREE Full Text
8. ↵
   Coulter A. Engaging patients in healthcare. Open University Press, 2011.
9. ↵
   De Bronkart D. How the e-patient community helped save my life. BMJ2013;346:f1990.
   Check LinkSource for full textFREE Full Text
10. ↵
    Dentzer S. Rx for the “blockbuster drug” of patient engagement. Health Affairs2013;32:202.
    Check LinkSource for full textFREE Full Text
11. ↵
    Mulley A, Trimble C, Elwy G. Stop the silent misdiagnosis: patient preferences matter. BMJ2012;345:e6572.
    Check LinkSource for full textFREE Full Text
12. ↵
    Roland M, Paddison C. Better management of patients with multimorbidity. BMJ 2013;346:f2510.
    Check LinkSource for full textFREE Full Text
13. ↵
    Lapsley P. Lessons from patient journeys. BMJ2013;346:f1988.
    Check LinkSource for full textFREE Full Text
14. ↵
    Hadler NM. The citizen patient. University of North Carolina Press, 2013.

 

[Enid]

Wow - thanks Esther - is the whole culture of "we know best and you know nothing" finally on the way out now - hooray. Their own failures have been making headline news for some time.

 

[biophile]

Every time I read articles on this topic, a small part of me expects to see "except for those pesky CFS patients" or "input from CFS patients is only desired if they agree with our opinions and do not in any way challenge them".

Somewhat off-topic ... BMJ is in the UK not USA, but I just wanted to quote this anyway:

"The long-standing and abundantly attested historical associations of the caduceus with commerce, theft, deception, and death are considered by many to be inappropriate in a symbol used by those engaged in the healing arts."

http://en.wikipedia.org/wiki/Caduceus#Misuse_as_symbol_of_medicine

Looking at the American medical profession, some of those characteristics are a perfect representation.

 

[Enid]

Bump - this is a change of simply the culture of the whole of medicine.....that's your doc, my doc round the corner who we have carried for too long.

 

[Esther12]

Every time I read articles on this topic, a small part of me expects to see "except for those pesky CFS patients".

No need for them to draw other's attention to it biophile - actions speak louder than words!


The above article reminded me that we've recently had White in the BMJ pretending that he's all for 'AllTrials', which requires researchers to release data in the manner laid out in their protocol (while ignoring his refusal to do so: https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po ) and then presenting pesky patients making FOI requests as a threat to patient confidentiality.

http://www.bmj.com/content/346/bmj.f3379

Is sharing data always a good idea?
13 May 2013
Not many clinicians or scientists would argue with the campaign by "All Trials" to register and report the full methods and the results of clinical trials.1 But is it sensible to go so far as to "..encourage authors of all BMJ papers to share their datasets publicly..", so that all may see?2
We routinely reassure participants in clinical trials that their data will be held securely and confidentially. Research ethics committees rightly insist on locked filing cabinets, and only the researchers having access to digital data. Is this reassurance consistent with public release of patients' confidential data without their consent? Although only "anonymised" data are proposed for public release, is data truly anonymous when details of age, gender and perhaps locality are linked to past and current medical histories; data often collected in trials to examine moderators and mediators of efficacy?
And what will potential trial participants of the future think of the reassurance of confidentiality when they know that their "anonymised" data will be publicly available for anyone to access? Will this encourage more patients to take part in trials, or will this have the opposite effect?
I prefer the Medical Research Council's current policy on access to research data; consider release only to bona fide researchers, working for bona fide research organisations, who sign up to the same standards of respecting the confidentiality of the data as the original researchers.3
1 Groves T, Godlee F. The European Medicines Agency's plans for sharing data from clinical trials. BMJ 2013;346:f2961.
2 All Trials campaign. All trials registered. www.alltrials.net (accessed 13.5.2013).
3 Medical Research Council. Data sharing requirements for population and patient studies. http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/Datasharing/poli... (accessed 13.5.2013)
Competing interests: I have received a number of Freedom of Information requests from members of the public for all the data from a recent trial of non-pharmacological treatments of chronic fatigue syndrome.

 

[Enid]

Bump, bump Esther.

 

[Esther12]

Pleased to see you're liking it Enid. There have been quite a lot of articles like this recently. It seems like they're coming to terms with the fact that they cannot keep sweeping the problems with the way patients are treated under the carpet.

 

[Firestormm]

Jeepers Esther that's an awful lot of folk to produce a relatively short article - don't you think:

1. Tessa Richards, analysis editor1,
2. Victor M Montori, professor2,
3. Fiona Godlee, editor in chief1,
4. Peter Lapsley, patient editor1,
5. Dave Paul, secretary of the patient advisory group 2

Cripes

 

[Simon]

Jeepers Esther that's an awful lot of folk to produce a relatively short article - don't you think:

Cripes

I would have thought that the more that explicitly endorse this, the better.

This article is now open access, after I contacted the BMJ re Esther12's point that patients couldn't read their piece on patient engagement - and they listened:

Let the patient revolution begin | BMJ

 

[xchocoholic]

Interesting. I'd say the revolution has been going on since
patients discovered the internet. Esp the health forums.

If i understand this article they're just catching on.
Are they creating a committee to deal with it ?

Tc ... x

 

[Simon]

The above article reminded me that we've recently had White in the BMJ pretending that he's all for 'AllTrials', which requires researchers to release data in the manner laid out in their protocol (while ignoring his refusal to do so: https://www.whatdotheyknow.com/request/pace_trial_recovery_rates_and_po ) and then presenting pesky patients making FOI requests as a threat to patient confidentiality.

http://www.bmj.com/content/346/bmj.f3379

...I prefer the Medical Research Council's current policy on access to research data; consider release only to bona fide researchers, working for bona fide research organisations, who sign up to the same standards of respecting the confidentiality of the data as the original researchers.3

3 Medical Research Council. Data sharing requirements for population and patient studies. http://www.mrc.ac.uk/Ourresearch/Ethicsresearchguidance/Datasharing/poli... (accessed 13.5.2013)

I've just read those MRC guidleines and couldn't find a reference to specifically only considering release to 'bona fide researchers working for bona fide research organisations', though I did find this:

R6. MRC encourages researchers to work in productive, equitable partnerships, e.g. with medical charities and industry. Sharing involving commercial or non-UK based organisations must conform to the same principles and practices as that required of the academic community.

Perhaps the MRC do intend the data to be available to anyone with appropriate skills and willing to meet the necessary confidentiality standards. As in 'share data publicly', as AllTrials state.

A (scientist) friend of mine commenting on open access data and patient willingness to share, said it's probably like organ donation (without the dying): people do it freely to help and don't want to restrict who gets it.

I think most patients go into trials with the goal of helping provide information that will ultimately help other patients - not to provide proprietary data to researchers. And I suspect they don't much care who accesses their data so long as it is properly anonymised.

 

[Simon]

some highlights, from my perspective. All bolding mine

1. Interests of patients trumped by those within the system

...Practice is informed by an incomplete research base bedevilled with selection and reporting bias,4 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.5 This corruption in the mission of healthcare requires urgent correction. And how better to do this than to enlist the help of those whom the system is supposed to serve—patients?

...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

2. Critical role of patients - even online communities

...Discussion groups of patients, carers, and clinicians led by the James Lind Alliance in the United Kingdom, and the Patient Centered Outcomes Research Institute in the United States, are shedding light on the mismatch between the questions that patients and doctors want answers to and the ones that researchers are investigating. Joint discussions have helped build a database of uncertainties about the effects of treatment (www.library.nhs.uk/duets/).

...Online patient communities where patients meet, talk, support, inform, and coach each other are empowering patients (although it is important to note who sponsors them).9 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.

3. What the BMJ plans to do

...For its part the BMJ is stepping up its commitment to patient partnership. We already have an online collection of articles on shared decision making and a growing library of patient journey articles.13 Now we want to develop a strategy for patient partnership that will be reflected across the entire journal. We plan to establish a panel of patients and clinicians to help us with this work and will report back on our progress.

It has been said that healthcare won’t get better until patients play a leading role in fixing it.14 We agree and look forward to helping drive the patient revolution on.

 

[MeSci]

some highlights, from my perspective. All bolding mine

1. Interests of patients trumped by those within the system


2. Critical role of patients - even online communities


3. What the BMJ plans to do

Yet SIR Simon (did they knight the wrong Simon? ) believes that using online forums perpetuates our illness...

 

[MeSci]

Wow - thanks Esther - is the whole culture of "we know best and you know nothing" finally on the way out now - hooray. Their own failures have been making headline news for some time.

Don't hold your breath. It's been NHS policy for years that the doctor-patient relationship should be an equal one, with both respecting each other's input. But it has continued to be the exception rather than the rule.

Here is the NHS Constitution which has been advocating this for some time:

http://www.nhs.uk/choiceintheNHS/Ri...013/the-nhs-constitution-for-england-2013.pdf

and here is some additional stuff about NHS patients' rights:

http://www.adviceguide.org.uk/england/your_family/health/nhs_patients_rights.htm

 

[Esther12]

I've just read those MRC guidleines and couldn't find a reference to specifically only considering release to 'bona fide researchers working for bona fide research organisations', though I did find this:

Perhaps the MRC do intend the data to be available to anyone with appropriate skills and willing to meet the necessary confidentiality standards. As in 'share data publicly', as AllTrials state.

A (scientist) friend of mine commenting on open access data and patient willingness to share, said it should be like organ donation (without the dying): people do it freely to help and don't want to restrict who gets it.

I think most patients go into trials with the goal of helping provide information that will ultimately help other patients - not to provide proprietary data to researchers. And I suspect they don't much care who accesses their data so long as it is properly anonymised.

Thanks Simon. Good to check up on their claims for these sorts of things.

And thanks for your thoughts on this. I'm a bit with MEsci - "I'll believe it when I see it" - particularly with CFS.

 

[Simon]

Yet SIR Simon (did they knight the wrong Simon? ) believes that using online forums perpetuates our illness...

I can only hope their error is spotted and corrected

MeSci, Esther12
I don't think the revolution has happened yet, but I do think things are beginning to happen and a movement is building - not because of the BMJ editorial itself but for all the other things that are going on too, such as PCORI in the US. Might blog about this if I can get my act together.

 

[alex3619]

I can only hope their error is spotted and corrected

MeSci, Esther12
I don't think the revolution has happened yet, but I do think things are beginning to happen and a movement is building - not because of the BMJ editorial itself but for all the other things that are going on too, such as PCORI in the US. Might blog about this if I can get my act together.

Please do blog about this, I for one would really want to read that.

 

[biophile]

Shared trial data may identify at-risk cancer patients

18:23 09 April 2014 by Asher Mullard

http://www.newscientist.com/article...data-may-identify-atrisk-cancer-patients.html

Waste not want not. An initiative launched this week aims to breathe new life into neglected data from clinical trials.

Pharmaceutical companies spend billions of dollars collecting trial results, only for these findings to collect dust after a drug is either marketed or abandoned.

Through Project Data Sphere, six pharma companies and a medical research centre will release data from 34 cancer trials by the end of the year. The pooled results will be from the control groups of the trials – those not given new treatments – adding up to data from 25,000 people.

"We can really do some amazing things with these data beyond what they were collected for by making them available to the broader community," says Charles Hugh-Jones, one of the project organisers from pharma firm Sanofi. AstraZeneca, Bayer, Celgene, Johnson & Johnson, Pfizer and Memorial Sloan Kettering Cancer Center are also on board, with more groups to follow.

Sharing the data could lead to the design of more efficient trials, for instance by serving as a virtual control group and so reducing the number of people needed. It may also help identify rare subsets of people who react badly to standard treatments, or shed new light on how cancer progresses.

"We cannot predict at the moment what the most important benefits will be," says Hugh-Jones. "But if you get large enough data sets, and enough people looking at the data, it is a mathematical certainty that we will get benefits."

Project Data Sphere is being made available online for free via an open access portal. Most users are expected to come from within industry and academia, including PhD and medical students.

To encourage participation, Project Data Sphere will run a series of competitions – starting with a focus on prostate cancer.

"This is where the next leaps forward in medicine are going to come from," says Martha Brumfield, CEO of C-Path, a non-profit organisation that was one of the first to spearhead the sharing of clinical trial data.

But Peter Doshi, at the University of Maryland School of Pharmacy, says that drug developers must become much more transparent before mothballed results can achieve their full potential. Only once drug companies release all aspects of their trial results, Doshi says, can doctors and patients properly assess the safety and side effects of an approved drug. "I'd like to see [Project Data Sphere] revisit the question of allowing public access to the intervention arm trial data," he says.

Privacy issues and the competitive nature of drug development preclude wholesale transparency, however. Hugh-Jones says Project Data Sphere is about what's achievable, rather than what's ideal: "It's not about transparency, it's about trying to come up with solutions to improve outcomes for cancer patients."

I had a quick look at https://www.projectdatasphere.org/projectdatasphere/html/home.html .

It appears that you have to apply for access, and have to agree to data protection rules etc, but I did not see anything restricting usage to 'bona fide' researchers only.