Towards the patient revolution

BMJ 2014; 348 doi: http://dx.doi.org/10.1136/bmj.g1209 (Published 29 January 2014)
Cite this as: BMJ 2014;348:g1209

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In her editorial (29/1/14) Fiona Godlee refers to making patient partnership a reality. One recent example of such a partnership, and in a field which has very little history of partnership, is the VOICE project, which was jointly developed by Independent Cancer Patients’ Voice (ICPV) and Bart’s Cancer Institute (BCI).

To date, patients have had very little involvement or experience of laboratory based research which can cause challenges for patients and carers, who often have a limited understanding of cancer biology.

Researchers at BCI and members of ICPV therefore worked in partnership to develop a 5 day training course for cancer patient advocates which aims to lead patients through the research process beginning with basic biology, through to experiments in the lab and on to discussing clinical trials.

In addition to attending lectures and performing experiments participants were able to meet and speak with cancer scientists. We believe that this project is the first of its kind in the world to offer people affected by cancer an opportunity to spend time in laboratories in order to build a practical understanding of cancer biology.

The inaugural course took place from 9-13 September 2013. Early feedback suggests that participants are more confident about discussing laboratory based research in their roles as advocates having gained a better understanding of how work is done by laboratory-based researchers. An additional impact is that scientists who were involved in the course have been both motivated and inspired by their contact with participants.

We are planning a six month follow up of participants to assess the longer term impact of the course, and will be repeating it in 2014.

For more information see: independentcancerpatientsvoice.org.uk/voice-science-for-patient-advocates/

Competing interests: None declared

Adrienne Morgan, Patient Advocate

Maggie Wilcox, Mairead MacKenzie, Bec Hanley, Richard Grose, John Marshall, Louise Jones

Independent Cancer Patients' Voice, 17 Woodbrudge Street, London, EC1R 0LL

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The enthusiastic response which BMJ received from patients and patient advocates was on expected lines. In a developed country with most of patients and families enjoying good educational status and material resources the patients are aware of their rights and they welcomed the opportunity to put forward their viewpoint.

However in a developing country like India where access to health services is limited patients are a harassed lot. The government health institutions lack resources both material and human. The private hospitals especially corporate hospital charges are obnoxiously high, which even upper crest of middle class finds difficult to pay.

Patients deserve to be part of activities involving delivery of primary, secondary and tertiary health services. Under the initiative pushed by central government in India, now the government hospitals in most of the states have 'Rogi Kalyan Samitis' or 'Patient Welfare Committees' which draw their membership from patients, patient advocates and doctors. Their brief is to improve patient care in the hospital. At a number of places these are doing good work but mostly these are only ceremonial.

The initiative launched by BMJ will surely set-up a model which may encourage similar initiatives world over.

Competing interests: None declared

Dinesh K Sharma, Physician

GMC Amritsar India, 73FF MIG Flats B Block Ranjit Avenue Amritsar India 143001

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Nothing can stop the “patient revolution”. For some doctors this is the sign of deconsecration of medicine. For others, it is a new opportunity for patients’ autonomy.

Patients will be improving our approach of research as they are improving our approach of teaching medicine.

Medical Students of Paris Descartes Medical School are enjoying a course given by patients themselves (2). This teaching enables an open and direct discussion to define what patients are really expecting from doctors and medicine. With this ethical approach, medical students are improving their care relevance.

This “patient revolution” is also a special demand for more accountability in medical practice and research. We should direct “education, research and service activities towards addressing the priority health concerns of the community, region, and/or nation [we] have a mandate to serve”(3).

As a Global Consensus for Social Accountability of Medical Schools exists (4) (5), we appeal to any other initiative of Social Accountability.

Congratulations to the BMJ for this fundamental ethical initiative (6). Now we hope others journals will take up this idea and apply it.

(1). Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ. 2013 May 14;346(may14 1):f2614–f2614.
(2). Piccoli M. Passer de l’Etudiant Médecin au Médecin Responsable : Malaise et problématiques éthiques des étudiants en Médecine Etude transversale sur les étudiants en DCEM 3 de Paris Descartes. Mémoire de recherche en Master 2. Université Paris René Descartes; 2012.
(3). Boelen C, Heck JE. Defining and Measuring the Social Accountability of Medical Schools. Division of Development of Human Resources for Health, World Health Organization; 1995.
(4). Boelen C. [Global consensus on social accountability of medical schools]. Sante Publique. 2011 Jun;23(3):247–50.
(5). Global Consensus for Social Accountability of Medical Schools [Internet]. [cited 2014 Feb 4]. Available from: http://healthsocialaccountability.org/
(6). Godlee F. Towards the patient revolution. BMJ. 2014 Jan 29;348(jan29 1):g1209–g1209.

Competing interests: None declared

Benoit V. TUDREJ, General Practitioner, PhD Student

Pr. Christian Hervé

Laboratoire d'Ethique Médicale et de Médecine Légale, EA4569, Université Paris Descartes, 45 Rue des Saints-Pères, 75006 Paris,France

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Patient empowerment and involvement - motherhood and apple pie - what's not to like? The problem becomes that, once you go outside the individual doctor-patient relationship, it is necessary to be very careful about the balance of any group that purports to determine patients' interests as a whole.

This is illustrated in the field of disability, where a great deal of policy has been developed to meet the perspective of highly competent people who have physical disabilities and have found themselves marginalised in the past by lack of access and inappropriate assumptions. Their perspective is legitimate, insofar as it relates to their own situation, but has been used to try to impose policies such as inclusive schooling, supported living, and personal budgets on people with completely different needs, regardless of whether they are meaningful for them.

Another point to be wary of is that patient and patient advocate views may only be considered to be a good thing, if they support the agendas of those in power - i.e. lots of warm words about compassion and communication, quite a bit about abjuring the medical model and rejecting paternalism, but not so much about being allowed access to specific treatments.

Competing interests: doctor, patient, carer, trustee of a charity supporting people with learning disability and autism

Hilarie Williams, specialty doc, patient and carer

not representing views of my employer, North London

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This is all very laudable. Just remember that the patients attending a meeting in Central London are not representative of the rest of the country. They are a skewed socioeconomic group. So many other things about the UK health system are decided based on London thinking and this is another.

Competing interests: None declared

W Leslie Alexander, Ophthalmologist

Peninsula Eye Hospital, 47 Redcliffe Parade, Redcliffe, QLD 4020

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Although patient partnership has been established in some healthcare quarters of healthcare for several years (Cancer Networks, Medical Royal Colleges etc) quality has varied and genuine equity, with patients being involved 'from the outset' a rare practice. I have experienced the best, and the worst.

By opening its doors to much wider patient participation, the British Medical Journal can show by example what partnership with patients should really mean.

This isn't just an opportunity for patients and patient advocates to have a voice, it's a unique opportunity to change mindsets; to change a culture. On a par with women being allowed into pubs (and men's clubs)?

Genuine partnership with patients brings a new dimension to healthcare, one that is sorely needed. The BMJ is to be congratulated on this bold move.

Competing interests: None declared

Mitzi AJ Blennerhassett, medical writer/author

Trustee Director, Rarer Cancers Forum, York YO62 4AQ

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I believe I have a novel dominantly inherited familial disorder that inter alia appears to present with conditions associated with P5CR disorders, diarrhea and with neurodegenerative and neuropsychiatric problems that include symptoms of psychosis. The disorder is identifiable by repeating low serum amino acids ornithine and serine.

However, despite considerable efforts and a world-wide search, until recently I was not able to identify a doctor or researcher prepared to investigate my disorder. In other words, the progress I feel I have made has been made on my own.

I identified the tests that showed the most significant abnormalities and I established what these results likely meant in terms of the mechanism of my disorder. I am making progress in identifying effective treatments. I feel I am a small part of the patient revolution.

I believe my repeating low ornithine very likely reflects over-activation of a cortisol up-regulated pathway from proline to proline dehydrogenase to pyrroline-5-carboxylic acid to ornithine to ornithine decarboxylase to polyamines. Over-activation of this pathway would explain my repeating low ornithine and would also directly explain my high maltase and lactase on the low side of normal. In support of this conclusion, I refer to Enhanced intestinal synthesis of polyamines from proline in cortisol-treated piglets - Wu et al - 2000.

In the case of the repeating low serine, I am investigating whether there is a connection between my low serine and nitric oxide, sGC, cGMP and/or serine proteases.

Clinically speaking, over-activation of the proline to polyamine pathway would account for the cortisol triggers the disorder presents with, and the prevalence of P5CR conditions in me and my family. This being because P5CR reverses the proline to pyrroline-5-carboxylic acid pathway. RU486, which is reported to abolish cortisol stimulation of the proline to polyamine pathway in pigs, is mifepristone. Mifepristone is a drug which is in late-stage trials for psychotic depression. So over-activity of this polyamine pathway may also account for the symptoms of psychosis that the disorder presents with. A connection between serine and nitric oxide/sGC/cGMP would account for the diarrhea and the symptoms of neuro-degeneration.

I suspect that there may be connections between nitric oxide and sGC/cGMP and the urea cycle, and there may be signalling from the vicinity of sGC/cGMP that results in over-expression of ornithine decarboxylase.

Whilst I recognize that as an ‘amateur’ I may have made mistakes in researching my own condition, I do think the broader conclusions I have drawn that are outlined below have merit and should be addressed by the medical profession.

Some cancers, neurodegenerative and neuropsychiatric diseases are reported to present with recurring abnormal patterns of amino acid abnormalities. Abnormal amino acid profiles are diagnostic of some metabolic disorders, for example, P5CS disorders and some urea cycle disorders. This strongly suggests that under-pinning at least some of these disease states are as yet unidentified metabolic/enzymatic disorders (‘metabolic disorders’). I would class my own disorder as a metabolic disorder.

Whilst identifying the numerous metabolic disorders that may be causative of the disease states may take some time, this information could and should be put to immediate use.

In drug trials for those diseases that are already known to present with abnormal amino acid profiles, it surely makes sense to test the amino acid profiles of the trial participants to assess which underlying disorders/abnormal amino acid profiles respond to the drug being trialled.

Further, given the variety and complexity of metabolic pathways, it is probable that there are a multitude of different metabolic/enzymatic defects responsible for various disease states. If a disease state caused by an underlying metabolic disorder is treated and the underlying disorder is left untreated, the disorder will, in all likelihood, find an alternative expression in another disease state.

There should therefore be a greater focus on identifying and treating the individual patient’s underlying disorder.

In large part, this lack of focus on identifying and targeting the expected plethora of underlying disorders is because resources are mainly focused on finding universal biomarkers and one-size-fits-all treatments for disease states. Identifying and treating the underlying disorders causing each individual’s disease should receive a greater share of research resources.

What surprised me most in reading research was the lack of any systematic or organized approach to by far the majority of the research into the causes of diseases. This lack of co-ordination and structure is obviously not an effective problem solving method.

Competing interests: None declared

John N Williams, Student

None, London W149PF

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The BMJ's initiative is great, and perhaps needs to be properly tested in a trial, difficult though that would be to design. I've long held the view that some things are far too important to be left to the experts, who should be "on tap but not on top" to misquote Churchill. As a patient advocate, with only an elected public Governorship of NHS FT to legitimise my activity, I'm always pleased to be invited to contribute. But I'm sometimes not given the opportunity until after the clinicians have decided what is best.

Competing interests: None declared

John G Gooderham, locum lollipop lady

none, Billingshurst RH14 9TJ

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Dear Fiona

Thanks so much for this editorial. You write:

"We said that patients, far more than clinicians, understand the impact of disease and treatment."

That is a far reaching statement. It all depends, maybe I understand better how much pain I experience since it is my body.... but treatment. I know my perspective and experience but understanding always includes a comprehension of the WHY.... Do I as a patient? Does the doctor?
Not sure if I may say so.

You also write:
" We said that clinicians and patients therefore needed to work in partnership if we are to improve healthcare."

I think the above statement is great but works just fine without the former about understanding. Unless we collaborate - partner - empower the patient it will be difficult to get better value for the money. Put differently, the cost spiral will continue. And who can afford these days paying for things we do not need? Getting the input from patients regarding editorial issues is making sure that another important stakeholder is being heard. If this helps improve the added value of your content for your target audienceI(s).... great.

Nevertheless, managing costs, not forgetting the patient's perspective and so forth could be one of the many reasons why we need to consider carefully what patient groups, self-help groups, GPs, hospitals and so forth can benefit from new technologies.

"By sharing their own data and analyses through social media, trial participants are breaking the cultural and actual codes of clinical trials."

This is great but is our goal not to make these trials better, faster, more reliable, valid, useful, etc.? Can social media help here:

SEE ALSO http://blog.careum.ch/blog/selbsthilfegruppe-patientenorganisation-1/

IN CONCLUSION: Letting patients have a voice on all your committees is a great step in the right direction. Chapeau!

Thanks for sharing.
Urs @ComMetrics

Competing interests: None declared

Urs E. Gattiker - CyTRAP BlogRank, Researcher

CyTRAP Labs GmbH, Röntgenstrasse 49

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Godlee asks “whether our main challenge will be just keeping up with the speed of change.” [1] She draws attention to Wicks et al`s assertion that “when it comes to clinical trials some patients are already well ahead of the game.”[2] : this is not new.

Twenty two years ago, in 1992, the BMJ drew attention to the influence of the AIDS activists in taking matter into their own hands. [3] In 1994/5 this incident was recounted at a Lancet conference in Bruges, and published in a Government Health Select Committee Report [4] :

“The United Kingdom, like the United States, has seen patient participation and involvement in AIDS trials, thus leading the way. Patients have a rôle to play by advocating to trialists that what they view as havoc being cause by organised well-informed patients (as we saw in The States) was in fact a challenge to the trialists` interpretation of the uncertainty principle which had ignored the patients` preferred outcomes.[3] The resultant compassionate release of a “promising” new AIDS drug, rejecting the discipline of the proper and best method of evaluation, demonstrated more forcibly to the patients than any imposition of a trial, the folly of such demands and hasty judgement of efficacy. Trialists might argue that this prolonged the agony for current and future patients, but those involved patients might argue that it hastened the understanding of both patient and trialist about the need for unhurried, controlled evaluation of interventions within a well-designed trial, designed jointly to take into account both parties` needs, based on a recognition of everyone`s responsibilities in the matter. The benefit of the involvement of a healthy public in debating these issues cannot be over-emphasised.” [5]

I believe we need to remember to learn from history and evolve rather than 'revolve'. [6]

[1] Godlee, F. Towards the patient revolution. BMJ 2014;348:g1209

[2] Wicks P, Vaughan T, Haywood J. Subjects no more: what happens when trial participants realize they hold the power? BMJ 2014;348:g368

[3] Institute of Medical Ethics Working Party. AIDS, ethics and clinical trials. BMJ 1992; 305:699-701

[4] Thornton H. “The patient`s role in research”. (Paper given at The Lancet “Challenge of Breast Cancer” Conference, Brugge, April 1994.) In Health Committee Third Report. Breast Cancer Services. Volume II. Minutes of Evidence and Appendices. London HMSO July 1995. 112-114.

[5] Baum, M. “New approach for recruitment into randomised controlled trials.” The Lancet 1993; 341;812-814

[6] Thornton H. Empowerment is inappropriate for equal citizens. Letter: BMJ 2013;346:f3573 doi: 101136/bmj.f3573 4th June 2013 http://bmj.com/cgi/content/full/bmj.f3573

Competing interests: None declared

Hazel Thornton, Honorary Visiting Fellow, Department of Health Sciences

None

University of Leicester, "Saionara", 31 Regent Street, Rowhedge, Colchester, CO5 7EA

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