The BMJ’s own patient journeyBMJ 2014; 348 doi: https://doi.org/10.1136/bmj.g3726 (Published 10 June 2014) Cite this as: BMJ 2014;348:g3726
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We are delighted to see The BMJ taking the lead in promoting meaningful public and patient partnership in research through its new strategy1. We also support Vayena’s2 contention that the role of patients and the public in initiating and conducting health research is an important and often underplayed aspect of the “patient revolution” that The BMJ is seeking to advance. Involving patients throughout the research process in a major organisation may seem unrealistic but over the past five years the NIHR Collaboration for Leadership in Applied Health Research and Care for the South West Peninsula (a collaboration involving Exeter and Plymouth Universities and 13 NHS organisations, see http://clahrc-peninsula.nihr.ac.uk) has developed a model of patient and public involvement (PPI) in research, perhaps unique within the UK, which aims to do just this.
Working closely with researchers, clinicians and our “in house” Public Involvement Group (PenPIG), our model of PPI in research enables members of the public, including “seldom heard groups” such as people with dementia, to collaborate with researchers and clinicians in a number of ways: as generators of research questions, as co-applicants on grants, as advisors and developers of research methods, as members of trial management and steering groups, and as contributors to data analysis and written and oral dissemination. We have also demonstrated that PPI can be incorporated into research areas that typically have not involved the public, such as computer modelling and simulation of health systems in everyday operation3. PenPIG influence is embedded at an organisational level too, with an equal vote in the Stakeholder Group which prioritises PenCLAHRC research projects and representation on the Management Board. We also aim to evaluate the impact of our PPI activities (see http://piiaf.org.uk).
The NIHR is currently working on a strategic review of PPI in its research the full results of which are due to be presented at the INVOLVE conference in November 2014 (see www.invo.org.uk). As part of this review we asked PenPIG what they would see as the priorities for improving and extending PPI in health research. They identified two priorities that fit with The BMJ initiative:
1. Building public awareness of research and opportunities for involvement through increasing education about research and PPI for school students, medical students and researchers.
2. Increasing PPI in setting the research agenda and ensuring public involvement in the governance of research at national and regional levels.
It is clear from our experience that patients and members of the public can and should be involved in health research as both producers and users of research knowledge; in doing so they may help reduce research wastage4. The changes that The BMJ are making to increase public and patient partnership in their work, other initiatives around the country such as the James Lind Alliance, along with our work, are all showing what can be achieved; but they also demonstrate the fundamental importance of appropriate long term funding and sustained organisational commitment if the potential benefits of patient and public involvement are to be fully realised.
1. Richards T and Godlee F BMJ 2014;348:g3726
2. Vayera E. BMJ 2014;349:g4318
3. Pearson M, Monks T, Gibson A, Allen M, Komashieb A, Fordyce A, Harris-Golesworthy F, Pitt M, Brailsford S and Stein K. Involving patients and the public in healthcare Operational Research - the challenges and opportunities. Operations Research for Healthcare Operations Research for Health Care 2013;2:86-9
4. Chalmers I and Glasziou P. Avoidable waste in the production and reporting of research evidence. Lancet 2009;374(9683):86-9
Competing interests: No competing interests
As guest editor of the last BMJ patient issue, I'm delighted to see you are continuing to focus on the patient experience.
One area I've been concerned about is the willingness of GP surgeries to move from a paternalistic model to one where the patient is seen as a partner - and also as a customer. One indication of effective co-production is an active patient participation group: one which can help GPs to respond to local needs.
I'd like to see CCGs monitoring the percentage of GP surgeries in their area who have active patient participation groups. What better way of finding out who is committed to a partnership with their patients?
Competing interests: No competing interests
Taking phrases like “patient engagement” and “patient partnership” off the buzzword treadmill and enabling them to go the distance in the marathon journey of transforming healthcare is not an easy task. It is, however, one that we are required to pursue in the name not only of superior health outcomes, but also in order to establish processes that properly respect the interests and perspectives of patients. The BMJ is to be applauded for taking the lead in facilitating meaningful patient partnership.
However, an important piece of the jigsaw is underplayed in the article’s articulation of the dimensions of patient participation. This is the phenomenon of patients (as well as their families, friends an others) playing a leading role in initiating and conducting health research – part of the wider phenomenon of participant-led research (PLR). Thus, in recent years, articles have appeared in reputable scientific journals that were the product of research proposals devised by and carried out by patient groups, often facilitated by online social media. These activities promise to bring significant ‘value-added’ to existing structures centred on investigator-led research within universities and corporations.1,2,3
Not only does this development deserve to be registered, and encouraged, in its own right, it arguably has interesting synergies with other elements of “patient partnership” set out in the BMJ article. For example, the status of patients in the peer review of research articles takes on a different shape if these patients are regarded not only as potential beneficiaries of research, but also as potentially leading research activity themselves. It is an important question how this augmented status should be reflected in journal peer-review procedures.
What is in prospect, therefore, is a patient-centered revolution that goes even deeper and has profounder implications, since it challenges the dichotomy of patient versus researcher, providing a further basis for disrupting hierarchical relations within the health domain.
1. Swan M. Crowdsourced health research studies: an important emerging complement to clinical trials in the public health research ecosystem. J Med Internet Res. 2012 Mar 7;14(2):e46. doi: 10.2196/jmir.1988.
2. Vayena E, Tasioulas J. The ethics of participant-led biomedical research. Nat Biotechnol. 2013 Sep;31(9):786-7.
3. Vayena E, Tasioulas J. Adapting standards: ethical oversight of participant-led health research. PLoS Med. 2013;10(3):e1001402.
Competing interests: No competing interests
At present globally, the BMJ is the only medical journal that has taken these steps. With opening up their plans and acting on it publicly they took a heading from which they never could have backed off again. When we saw the impressive list of things that the BMJ is doing, witnessed some of the prior meetings, plans and efforts that preceded the adoption of their new strategy we wanted to encourage this mission. The journal is well aware that its embarking on a journey, Sure its going to get criticized, and challenged, and will stumble and learn from experience.
After speaking to some of the patients involved who completely agreed with our insights on the effort BMJ has put into this, we wanted to step ahead. Encouraging them with the Patients Included Award 2014 and the badge was therefore appropriate. For us, this is just the beginning, we really would like to stimulate change in the rest of the medical publishing world too.
Sure, it is not suitable for every type of research and also for many, the steps taken above may been seen as too big. But I believe, along with many others, that patients are the experts in having “lived experience“ of disease, so why not involve them?
The challenge will be how to ensure that all patients have representative participation, not just a vocal minority. And its important to clearly define what is meant by co-creation of content and patient partnership; and how to evaluate its impact.
So as we move to have Patients Included, first at conferences, and now in one of the largest medical journals in the world we hope that it will bring the same added value to medical publishing as it does to conferences.
More about this on https://www.linkedin.com/today/post/article/20140618060741-19886490-brit...
Competing interests: Developed the "Patients Included Act" that is referred to.
As Amy Price notes, "It is my impression from working with patients that their insights will be impressive and they will add dimensions and practicalities that may be missed by other reviewers. We will learn from each other".
In 2010 the Journal of Participatory Medicine published a few items that support widening the pool of potential reviewers to include patients and other users of health care information.
Participatory Evidence: Opportunities and Threats
Who’s a Peer? Improving Peer Review by Including Additional Sources of Expertise
Competing interests: I am the author of the second article mentioned here.
Ill health has become far to profitable and far too commonplace.
I absolutely approve of the BMJs initiatives towards genuine lay and patient involvement in the process of review. It is increasingly clear through the withholding of data on RCTs that the public is getting raw deal, and it is clear to that certain individuals are abusing the level of their 'eminence' to behave like radical fanatics stamping out the otherwise rightful expression of dissent.
The fat/cholesterol hypothesis is based upon a complete absence of evidence and examples of well-informed lay people and patients can be witnessed in blog and comment forums, some of them hosted by well-informed and experienced medical professionals, debating this matter and exchanging opinions can be witnessed about the web.
What's more this exchange is more than simply an exchange, it is fast growing instrument of teaching and learning, because often the blog and the comments beneath equate to more than the sum of the component parts. The thread beneath makes for added value. People share sources, and in outing their ideas they invite a kind of informal crowd-sourcing.
Moreover, the trade in ideas in such forums isn't always the passing on of insights from the blogging professional to interested follower, I do know that interested followers may submit ideas or links that invoke interest in the leading blogger, that may then lead to cognitive advances. It can be interesting to see the opinion of even a cardiologist trend over time as if under the influence of certain of his or her followers.
Closer to the BMJ the rapid responses (73 in number at the time of writing) published in re: the adverse effects of statins indicate how informed and responsive even pay people and patients can be. I browsed all 73 comments and gave at least 75% of them the thumbs up on the basis that many originated from well informed statins sceptics, some of whom had experienced intolerable and unacceptable adverse reactions, others were statin and cholesterol sceptic, and some supportive comments came from the 'faithful' number but who are offended by the emergent trend of eminent (if secretive) statin enthusiasts to express almost totalitarian intolerance in the face of the otherwise democratic expression of dissent.
The harsh reality is that exist a minority of lay people who are now fer better informed upon some certain health matters than are the majority members of the medical profession, and often, as could be quite reasonable to anticipate, certain patients are better informed upon their specific health matters that might be their GP (family physician). My experience of contact with members of the medical profession is that they generally exercise high levels of conservatism, they feel strong pressure to conform, persist in thinking NICE is promoting excellence and best practice in all areas, and cannot grasp some guidance is having them trend away from best practice, perhaps trending to something bordering on malpractice. The proposal to halve the QRISK2 threshold in re guidelines for lipid modification would be case in point, and it is generating opposition from within the ranks.
Meanwhile, in the blogosphere, and within sources and contacts the web grants easy access to a key and core bunch s laypeople are now assured the fat/cholesterol hypothesis must be laid to rest, while becoming increasingly assured of what its potential (and evidence supported) supported successor might look like. Of course, as with any hypothesis, it will need to placed upon an even firmer evidential footing. But this is crowd-sourcing at its best.
In submitting her rapid response Amy Price gets my full support for making the very pertinent point that being on both sides of the patient and diagnosis cum treatment divide lends for very insightful perspectives. My own curiosity in health matters arose several years ago and began with my diagnosis of T2DM and a growing is weak suspicion that may be the the advice health professionals issued could be improved. It has taken a while but I am absolutely convinced early diagnosis of T2DM or syndrome X (as equating to pre-diabetes) could opne the door for casue and naturally oriented guidance and interventions that could lead to a reversal of the diagnosis. This would not need drug based interventions, and some of the proposed interventions might raise an eyebrow amongst conservative probationers beholden of conventional wisdom,but indeed proposals would nonetheless be well thought out.
Few GPs have realised that a high proportion of their time is spent addressing health conditions that arise in modern and urban environments more than they do elsewhere or than did in former times. This is an indication the cause(s) prevail or are more intensive in this times and places. Much of a GPs time is pent addressing health issues that are man-made and arise from environmental factors prevailing in the urbanised world. The factors bear upon human endocrinology, and even upon our pets, putting added strain upon the detoxicant business of 'methylation', and adding to background levels of oxidative stress. The number of conditions that can be associated with one of the big indicators of this trend, homocysteine, runs to 100 or so.
The emerging model for the preservation of wellness in general, and the emerging model in relation to the real etiology of CVD point the way to more naturally oriented treatments and interventions, and more naturally oriented policy upon primary prevention. The emergent models understand matters well enough that at last the patients best interests can be brought forwards. Practitioners and s[specialists could cease to cover for their inadequacy with recourse to the prescription pad, and they coul increasingly exercise the new model of understanding where know the relationship of cause and effect implies the very expedient pathway of discouraging patient contact with 'cause'.
Sadly few GPs perceive the one thing they most agree upon, the fat/cholesterol hypothesis, is more cause than benefit.
The power of the lay mind is proven, with Anthony Colpo, author of a book, 'The Great Cholesterol Con', and Barry Groves, author of thoroughly researched book on the consequences of chronic hyperinsulinemia allied to chronic lipoxidative stress associating with dietary excesses of PUFAs, 'Trick and Treat, each lending gravitas and evidence to the idea that the lay mind can be progressive in its ideas, and can come up with evidence backed treaties that fly in the face of conventional wisdom.
More patients venturing to the great resource that is the BMJ, more exchange and debate in which they are involved, and a more transparent process of review that seeks and values patient contributions IS the way forwards. Hopefully this will be an initiative that will reverse the trend, and patients interests can again top the agenda above the financial agenda of the great corporate influence.
Natural interventions could prevent Alzheimers, of that I'm sure, and patients really have no more need of oligomer disruptors than they need HMG-CoA reductase inhibitors, and frankly the reality is that patient need HMG-CoA reductase inhibitors like a hole in the head. And I suppose the memory, cognitive, and responses degrading side-effects of HMG-CoA reductase inhibitors amount to that, a hole in the head.
Perhaps with increased patient involvement many a GP will be shamed into getting up to speed on certain matters. And of course they have my full support and respect for being so darned good at much of what they do. Nonetheless it is excellence we after.
Ill health has become far to profitable and far too commonplace
Christopher Palmer has no affiliations. His occupation is truck driver. Chris became interested in health science and health politics at the beginning of 2009. He has spent the last three years researching the fat/cholesterol hypothesis and despite the day-job considers himself a full time and freelancing researcher.
Chris 's interests now major of the methylation/homocysteine/oxycholesterol etiology for atherogenicity and CVD, and finds that it can aswer questions of 'convergence' better than does the fat/cholesterol hypothesis. Chris is a trending champion of cause oriented clinical excellence, as opposed to pharmacologically based practice.
Chris hopes to see much needed reinvestment in cause and naturally oriented best practice in medicine in his remaining lifetime.
Contact by email to email@example.com
Some links to support propositions placed:
if not cholesterol then what?
Des Spence: 'NICE is busted'
Dr John Briffa blogging on Clowns and Jokers with at least one comment of pure genius beneath.
Competing interests: No competing interests
LET THEM REVIEW
We live in a digitally connected world where approximately 50% of research papers are open access and freely downloadable , however these papers come without instructions or quality assurance stamps that patients could recognize.
One of the greatest challenges I have witnessed is the plight ignorant passionate patients who are exploited by those without integrity. One brilliant solution is “Let them review”
No option patients and those bombarded with the stress of a failing pain ridden body can become participants in research trials without knowing whether a trial is well run, ethical or even if it will ever be published . Patients can be confused, vulnerable and unsure of how to switch roles between patients and participants.
There has been little opportunity for patients themselves to discern between safe and ethical research. Teaching the public how to read a paper and to use the BMJ tools for equipping patients to review research restores the power and autonomy to the patient. This could lead to improved research safety and greater quality of life for the public everywhere. Through participatory discussion and reviewing the public can provide the opportunity to engage background knowledge with real life problem solving.
It would be wonderful to see patient reviewers sharing their experience and the comparisons recorded between what they see in a paper before and after training and how their contributions differ from traditional reviewers. It is my impression from working with patients that their insights will be impressive and they will add dimensions and practicalities that may be missed by other reviewers. We will learn from each other.
Healthcare providers, academics and scientists may be unable to keep up with the present rate of health care research which doubles every 19 years. There are 75 new trials and 11 systematic reviews produced daily . At the current rate health research could outstrip medical school learning and become outdated during the lifetime of clinical practice .
I hope for a future where trained patient reviewers could mentor others, infiltrate existing patient advocacy groups and develop research protocols with the general public and quantified-self participants. This inspiration for informed reviews could spread across cultures and be an agent for change to facilitate communication between research, science and health care.
Thank you BMJ for the wheels you have set in motion for real empowerment.
Amy Price has lived on all sides of this question after suffering significant trauma including traumatic brain and spinal injury. She is now a DPHIL student in Evidence Based Health Care at the University of Oxford where she works on the development of PLOT-IT Public Led Online Trials Infrastructure and Tools where the public can collaborate on building research trials on topics of interest to them. Amy can be contacted at http://ithinkwell.org
 Van Noorden R. Half of 2011 papers now free to read. Nature. 2013 Aug 22;500(7463):386-7.
 Gøtzsche PC. Why we need easy access to all data from all clinical trials and how to accomplish it. Trials. 2011. p. 249.
 Bastian H, Glasziou P, Chalmers I. Seventy-five trials and eleven systematic reviews a day: how will we ever keep up? PLoS Med [Internet]. 2010 Sep [cited 2013 Aug 16];7(9):e1000326. Available from: http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2943439&tool=p...
 Price A, Biswas T, Biswas R. Person-centered healthcare in the information age: Experiences from a user driven healthcare network [Internet]. European Journal for Person Centered Healthcare. 2013 [cited 2014 Apr 30]. p. 385–93. Available from: http://ubplj.org/index.php/ejpch/article/view/766
Competing interests: No competing interests
Society is stratified. Dictatorships have tyrants and victims; monarchies have royalty and commoners; governments have officials and citizens; military have officers and enlisted; hospitals have doctors and nurses; and businesses have bosses and workers. Stratification is a lopsided, stagnant system, in which a few fortunate people luxuriate in elitism, while many people vegetate in defeatism. Stratification devastates scientific progress and social justice by beatifying a few, but mortifying many. In short, stratification lacks science, conscience, and prescience.
Competing interests: No competing interests