Let the patient revolution begin
BMJ 2013; 346 doi: https://doi.org/10.1136/bmj.f2614 (Published 14 May 2013) Cite this as: BMJ 2013;346:f2614
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I would like to write a well crafted paragraph about patient's rights but I am too ill, so I will say what I want to say as plainly as possible. As a person with chronic illness, it is very important that I have access to high quality health information so that I can ask intelligent questions of my practitioners, do things that will help me recover, and avoid being taken advantage of by unethical practitioners. Currently, the BMJ Best Practice and other resources are not available for individual access in Canada and the United States, never mind access without charge. If the BMJ is interested in fixing the power imbalance in healthcare that so often leads to miscommunication and poor outcomes, and is committed to patient partnership, it will work to increase the health information available to consumers so that consumers can make informed choices about their own care. Knowledge is power. The BMJ and all of its information must be free and available to patients. Patients cannot improve healthcare if they do not have access to the same tools and information that physicians have access to.
Competing interests: No competing interests
I would like to thank the editors of BMJ for publishing my introduction to two essays which I presented as an attachment on 26-10-14, which can be seen here
http://static.www.bmj.com/sites/default/files/response_attachments/2014/...
However, in the second last sentence of the second essay I gave a link which was supposed to lead to the recent BMJ publication of my 30 year old research paper.
Although it contains relevant information, the actual link to that paper is here
http://static.www.bmj.com/sites/default/files/response_attachments/2014/...
Competing interests: No competing interests
Most people enter the field of medical research by acquiring the relevant qualifications, applying for research grants, and using the latest and most advanced literature and technology to determine cause, effect, and treatment.
However, I began due to necessity with the background of experience with many ailments which had been treated successfully, but some which were not, and which had accumulated in number.
I assumed that my doctor was not aware of the causes, and that he would have checked the latest journals, and that he wasn’t able to find anything else to solve the problems, so I decided to study them myself.
I began by making personal observations and detailed notes on each symptom regarding cause and effect, and progressed to reading books about diseases and anatomy, and by perusing the medical research journals.
However, I wasn’t familiar with the terminology so I purchased a medical dictionary to assist with interpretation until I became reasonably fluent in it’s use.
I already had a good education and favoured the principles of maths, chemistry, physics, and science where facts, evidence, and proofs are more reliable than anecdotes and opinions, and proceeded with that strict disciplined approach.
However, I was combining my personal experience with scientifically proven facts where sometimes both were required to gain the successful results in understanding and treatment methodology.
Nevertheless, the descriptions of symptoms which were essential to me solving problems is most commonly, and routinely dismissed or discredited as being “subjective”, as distinct from “objective”, where only independently assessed and verified scientific data is accepted.
In that regard, last year, I found out that the BMJ had introduced some facilities which they refer to as “the patient revolution” which includes the policy that anyone can submit articles to the journal, with the general understanding that they contribute substantially to the topic.
Some of the essays which I have since submitted were written in a predominantly scientifically objective manner, and others in the combined form with some observations based on personal experience, so I was not sure if they would be accepted or not, but most were.
However, about two months ago I had a very severe case of influenza, and I knew that antibiotics were ineffective against it so I waited some time before consulting a physician, and by then I had developed “community acquired pneumonia” (CAP), and it was a combination of medical diagnosis and antibiotics, and my own experience with previous flu’s which I used in treatment.
Also, quite often, I see comments on the internet from people who doubt that the chronic fatigue syndrome is different from ordinary fatigue, so I decided to describe the difference from a personal perspective where it is more than obvious.
Neither of those two essays have been accepted yet, and this section of BMJ advises that it doesn't give reasons, which I accept, but I assume that they might be considered to be too personal, or too subjective, or just anecdotal, or just opinion, or not scientific.
I know that it is my personal experience which enables me to solve health problems more effectively than anyone who hasn’t had that useful background knowledge, so I am resubmitting the two essays as an attachment to this introduction for anyone who wishes to read them.
Competing interests: No competing interests
In previous discussions in BMJ I have described why I decided to study medicine in 1975 to determine the cause and treatment for my own ailments.
I also described how exercise testing is used to measure the aerobic capacity of individuals, and why I therefore suggested that it could also be used to diagnose the chronic fatigue syndrome, where an abnormally low measurement is evidence which confirms the existence of the problem.
However, I have determined several other methods and will outline the origin of one of them here.
When I was in my late 20’s I awoke one night at about 1 a.m. with a very dull, but strong pain in the left side of my back, just below my shoulder blade.
I waited for the pain to subside, but it kept getting gradually worse until about an hour later when I decided to call the medical clinic and asked for a night doctor to attend a home visit.
Another hour passed before he arrived, and after I described the pain and showed him it’s location he almost immediately told me that it was due to a kidney stone.
He then gave me a morphine injection to relieve the pain and advised me to contact my local doctor the next morning to arrange for an x-ray to confirm the diagnosis.
The pain very gradually subsided to such an extent that I was able to get back to sleep.
When I awoke at about 7 a.m. the pain had returned so I arranged for an appointment with my doctor that day. He then organised an appointment for an x-ray, but there was a waiting list of about a week, during which time the pain was a more or less constant problem which was only occasionally and partially relieved by medications.
When I arrived at the clinic and entered the x-ray room I was asked to lay on a bed and was strapped onto it.
The bed was attached to a mechanical device which enabled the radiographers to move it at various angles so that the x-rays could reveal the flow of fluid through the kidney to confirm if the pain was due to a blockage, and identify it’s exact location.
The first x-ray was taken while I was laying flat on my back, and then the bed was tilted to various angles such as 30, 60, and 90 degrees upwards, and then sideways at various angles again, with a small interval of time between each position.
As the bed was first tilted I began to feel extremely faint and weak, and when it stopped moving I continued to feel faint for a short time but soon recovered. The same experience was repeated for each of the angles as the bed was moved up and to the side, and I slowly recovered again each time it stopped.
On one occasion when the bed stopped I told the radiographers that I had been having problems with faintness and fatigue for several years, and that, from my reading of the medical literature there was no method of diagnosing those symptoms, so I suggested that the sensation of faintness was probably due to a weakness of circulation which resulted in blood flowing away from my brain in the direction of the tilt under the influence of gravity.
I also suggested that placing pulse rate and blood pressure monitors on the wrists and ankles of patients who had an abnormal tendency to faintness and fatigue, and comparing the measurements with those of healthy people, could potentially show abnormalities which would be useful as a diagnostic method.
The x-rays revealed that I did have a stone blocking my left kidney, and I had surgery about another week later to remove it. When I awoke from the operation the pain was gone.
Conclusion
I concluded that measuring the effect on blood flow during tilt table testing would be a useful way of diagnosing the tendency to faintness and fatigue in the chronic fatigue syndrome.
Reference
Banfield M.A. 21-1-14, The value of exercise testing in the diagnosis, measurement, and treatment of the chronic fatigue syndrome, British Medical Journal, 21-1-2014, http://www.bmj.com/content/347/bmj.f5731/rr/683022
Competing interests: No competing interests
On May 18th 2013 the British Medical Journal (BMJ) included an editorial calling for a radical change in health care (1). I agree with most of the ideas presented in the editorial authored by Richards et al (1) and must be mentioned that I participated as keynote speaker in the conference on Shared Decision Making (SDM) announced in the editorial. But as I mentioned during my presentation at the SDM Conference held in Lima (2) I was negatively surprised with the selection of the May 18th print number cover (3). This journal cover used a classic twentieth century image, symbolically more associated worldwide with suffering rather with freedom to choose.
In defense of the use of this type of iconography it may be argued that the BMJ editors wanted to pass a message of the need of a radical change in health care: a patients’ revolution that could change health care and finally put patients at the center of care. To achieve this goal the use of some type of iconography related to violent change could be justified, even if doing so could mean that some individuals would feel offended.
In my country (and I am sure in many countries around the globe) an image like the May 18th BMJ cover could hardly be used publicly to promote any civil rights endeavor. In addition I believe that any message for a radical change required a rigorous consideration of the historical context of Western medicine and Western health care.
Over the last 100 years totalitarian regimes have used science and medicine to underpin their power (4) (5), often committing awful human rights abuses. Once in power the forces of totalitarian regimes seldom have run to arrest medical doctors (artists, poets, civil rights activist have being always first in the list). On the contrary, totalitarian regimes have used scientific western medicine to justify crimes like compulsive sterilization campaigns (6)(7). Also during the twentieth century, medical doctors around the globe have helped totalitarian regimes to justify arbitrary detentions (5)(8) and assisted in torture (9) and genocide (4)(10). In Latin America is known that western medical doctors have participated in awful crimes like helping delivering and stealing babies from pregnant prisoners, women that were then executed (11)(12). Also over the last 50 years western medical doctors have been involved in clinical research that did not respect fundamental right (10)(13). As our Human Rights record is not clear, are we Western medical doctors in liberty of using any type of image to promote our ideas?
The May 18th BMJ cover highlighted the image of a red fist associated with a clear message: Let the Patients’ Revolution Begin. The announced revolution is known to be the impulse of a group of outstanding medical doctors and patients that have been working in areas like SDM and that have the certainty of a path for a better future in health care: one that once for all respects patient’s desires and needs. Needless to say is that most of the common good ideas of this fine group of health care professionals are based on sound analysis of current scientific evidence.
Confronted to the scientific knowledge that assist the idea of the need of a radical change in health care are the bad doctors. And yes, we have to admit that there is always a confrontation when images and language includes the need for a red fist up revolution. To complete the scenario are the uncommitted patients that could be portrayed as ignorant of their power, waiting for guidance.
Twentieth century history has shown us that despite ideological certainty (or in this case Evidence Based Medicine supported facts) clear lines that divide individuals in societies are hardly found. Quite often enemies confronted in revolutions shared common historical background and moral values. But more importantly, most twentieth century totalitarian experiences have shown that the supposed beneficiaries of the revolutions not always were in agreement with the principles of the proposed change. Recent history shows us that most radical romantic slogans used to keep most on- going revolutions are just excuses to keep power within certain elites.
Do patients want a red fists up; evidence based guided revolution in their health care? I am not sure about that. I think most patients want a change that allows recognition of what they already are: persons, citizens, individuals with rights. Individuals that have achieve a number of rights over the last 50 years without the need of medical establishment approval.
Often is said that to achieve a radical change, like the patients’ revolution proposed in the BMJ May 18th issue, medical doctors and health care providers will finally have to put patients at the center of health care. My opinion is that there is no need to such action. The problem with healthcare is more related to medical doctors and other health care providers not recognizing the fact of who is at the center of care, rather than allow it to happen. More than a patients’ revolution what is needed is to allow simple democratic principles into medical practice. More than a Bolshevike revolution medicine needs Glasnost.
A good start will be to discuss if the May 18th cover was in fact only a product of an excess of good intentions. Or as I think, was an expression of a totalitarian dark side that needs to be extirpated from western medicine.
Bibliography:
1. Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ. 2013 May 14;346:f2614
2. A video recording of Dr. Gianella presentation at ISDM 2013 can be seen at http://isdm2013.org/video-archive/
3. http://www.bmj.com/content/346/7908
4. Barondess JA. Medicine against society. Lessons from the Third Reich. JAMA. 1996 Nov 27;276(20):1657-61.
5. Kosserev I, Crawshaw R. Medicine and the Gulag. BMJ. 1994 Dec 24-31;309(6970):1726-30.
6. Bock G. Racism and Sexism in Nazi Germany: Motherhood, Compulsory Sterilization, and the State. Signs, Vol.
8, No. 3, Women and Violence (Spring, 1983), pp. 400-421.
7.http://romediafoundation.wordpress.com/2013/02/07/forced-sterilization-o...
8. McLean GR, Jenkins T. The Steve Biko affair: a case study in medical ethics. Dev World Bioeth. 2003 May;3(1):77-95.
9. Vesti P, Somnier FE. Doctor involvement in torture. A historical perspective. Torture. Volume 4, No. 3, 1994.
10. Katz J. The Nuremberg Code and the Nuremberg Trial. A reappraisal. JAMA. 1996 Nov 27;276(20):1662-6.
11. A list of doctors involved in Human Rights violations in Argentina between 1976-1983 can be found at: http://www.desaparecidos.org/GrupoF/medicos.html
12. A follow to the judicial case against doctors involved in torture and stealing of newborns in Argentina can be found at: http://www.espaciomemoria.ar/megacausa_juicio.php?ju_ID=40&cabezal=megac...
13. Angell M. The Nazi Hypothermia Experiments and Unethical Research Today. N Engl J Med 1990; 322:1462-1464.
Competing interests: No competing interests
Dr Gianella should not be surprised at the political infantilism of much of our "intelligentsia". They probably have Che Guevara posters in their bedrooms.
Competing interests: No competing interests
Surmount the impasse around ME and CFS by using a diagnosis based
upon objective assessment of symptoms and biomarkers in research.
This contribution responses to the challenge posed by Richards and colleagues
1, in which they advocate a key role in fixing the shortcomings in healthcare.
There is a lot of controversy surrounding the etiology of and therapies for
Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) 2.
It is time to move forward and to leave the controversy behind us.
For that reason some reasonable requests are put forward by patients for years:
- clinical diagnosis should be based upon an objective assessment of
characteristic symptoms, e.g. the workload and oxygen uptake at ventilatory
threshold and at exhaustion at a second cardiopulmonary exercise test 24 hours
after a first exercise test 3 to objectify post-exertional "malaise"; - a distinction between patients with post-exertional "malaise" (and other
symptoms), to be assessed objectively, and patients with chronic fatigue without
post-exertional malaise is essential for research and clinical practice, e.g. to
end the debate with respect to the claim that cognitive behavorial therapy (CBT)
and graded exercise therapy (GET) is an effective and safe therapy for ME, CFS
and chronic fatigue patients 4; - an objective assessment of symptoms, e.g. cognitive impairment 5 and
orthostatic intolerance/postural orthostatic tachycardia syndrome, should be
utilized to define clinical ME and CFS patient subgroups in research; - biomarkers, e.g. gene expression and cytokine levels after exercise 6, T cell
and NK cell dysfunction 7, a decline in workload and oxygen uptake at the
anaerobic threshold at a second exercise test 24 hours later 3, should be used
to define biological subgroups of ME and CFS in research. - ME and CFS patients should be monitored before, during and after therapies
using objective measures for the clinical status of patients.
The often used diagnostic criteria for chronic fatigue (syndrome) 9 select an
heterogeneous population, have hampered scientific and clinical progress in the
last decades and frustrated many patients, clinicians and researchers.
As Fiona Godlee notes in her editorial 8, to make a clear distinction between
patients with post-exertional malaise ("ME"): a delayed, long-lasting increase
of cognitive deficits, overwhelming, permanent, and intense "fatigue", pain etc.
after a minor exertion, and patients with chronic fatigue (syndrome) 9 without
post-exertional malaise, is a clear and reasonable request 10.
For that reason the consensus criteria for ME 11 should be validated, adapted
and/or refined, and used in research and clinical practice to serve both ME and
CFS patients.
In order to finally make progress and to resolve the ME and CFS debate at last,
it is crucial to listen to sensible requests of patients.
References
1. Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ 2013;346:f2614. doi: 10.1136/bmj.f2614.
2. Holgate ST, Komaroff AL, Mangan D, Wessely S. Chronic fatigue syndrome: understanding a complex illness. Nat Rev Neurosci 2011;12:539-544. doi: 10.1038/nrn3087.
3. Snell CR, Stevens SR, Davenport TE, VanNess JM. Discriminative validity of metabolic and workload measurements to identify individuals with chronic fatigue syndrome. Phys Ther 2013. doi: 10.2522/ptj.20110368.
4. White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, et al. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. The Lancet 2011;377:823-836. doi: 10.1016/S0140-6736(11)60096-2.
5. Cockshell SJ, Mathias JL. Cognitive functioning in chronic fatigue syndrome: a meta-analysis. Psychol Med 2010;40:1253-1267. doi: 10.1017/S0033291709992054.
6. Light AR, Bateman L, Jo D, Hughen RW, Vanhaitsma TA, White AT, et al. Gene expression alterations at baseline and following moderate exercise in patients with chronic fatigue syndrome, and fibromyalgia syndrome. J Intern Med 2012;271:64-81. doi: 10.1111/j.1365-2796.2011.02405.x.
7. Curriu M, Carrillo J, Massanella M, Rigau J, Alegre J, Puig J, et al. Screening NK-, B- and T-cell phenotype and function in patients suffering from chronic fatigue syndrome. J Transl Med 2013;11:68. doi: 10.1186/1479-5876-11-68.
8. Godlee F. Ending the stalemate over CFS/ME. BMJ 2011;342:d3956. doi: 10.1136/bmj.d3956.
9. Fukuda K, Straus SE, Hickie I, Sharpe M, Dobbins JG, Komaroff AL. The chronic fatigue syndrome: a comprehensive approach to its definition and study. Ann Intern Med 1994;121:953-959. doi: 10.7326/0003-4819-121-12-199412150-00009.
10. Twisk FNM, Arnoldus RJW. Comment and reply on: ME is a distinct diagnostic entity, not part of a chronic fatigue spectrum. Expert Opin Med Diagn 2013;7:413-415. doi: 10.1517/17530059.2013.795147.
11. Carruthers BM, van de Sande MI, de Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. Myalgic encephalomyelitis: international consensus criteria. J Intern Med 2011;270:327-338. doi: 10.1111/j.1365-2796.2011.02428.x.
12. Cockshell SJ, Mathias JL. Cognitive functioning in chronic fatigue syndrome: a meta-analysis. Psychol Med 2010;40:1253-1267. doi: 10.1017/S0033291709992054.
Competing interests: No competing interests
The ‘imperative’ of patient and public involvement (PPI) is acknowledged today more explicitly than ever by key stakeholders influencing the development, delivery and overseeing of health research and implementation in the UK. We see the BMJ’s recent editorial - titled “Let the Patient Revolution Begin” - as a welcome commitment of policy and intellectual resources to ‘engaging patients’; however we are wary of a rhetorical emphasis on ‘revolution’ that is supposedly needed in the field. Firstly, this acknowledgement comes years after patient involvement has been moved, both discursively and organizationally, to the centre of successive UK governments’ agendas, leading in 2006 to the establishment of INVOLVE, a dedicated national advisory group for supporting involvement in health research. As early as 2001 Hanley et al reported in the BMJ that user involvement throughout the cycle of clinical research is reorienting the clinical research agenda towards the patient interests.
The editorial also seems to overlook more than a decade of critique developed by health and social research into involvement, which has convincingly exposed the weaknesses of implementing the involvement agenda. For instance, Tallon et al (2000), writing in the Lancet, raise serious concerns that evidence-based research is becoming unrepresentative of patient needs, as researchers do not find ways to meaningfully involve service users in their projects.
Our own recent studies into the practical enactment of involvement in stroke research and care services (Komporozos-Athanasiou et al, 2011; McKevitt et al, 2010; Fudge et al, 2009) substantiate these concerns, showing the power shifts implicit in the ‘revolution rhetoric’ to be little more than an empty promise. Moreover, the kind of patient empowerment discussed in this editorial seems to reaffirm the mechanism of individual choice – a model of involvement that has been consistently challenged for being unable to represent lay interests (e.g. Martin, 2011; Barnes, 2008), contradicting the patient’s basic need for care (Henwood et al, 2011; Salander and Henriksson, 2005) and neglecting relationships of trust wherein responsibility and control may indeed be retained by the doctor/scientist/professional researcher (Wright et al, 2004). In response to the discourse of ‘patient revolution’, ‘empowerment’ and ‘informed choice’, our research suggests that it is essential to re-articulate the potential of patient involvement in terms that recognise the important relational nature and function of health systems. Effective and meaningful involvement requires the commitment of time in the development of relationships amongst the various stakeholders – it does not - and cannot - happen overnight; building an active community that engages in dialogue and shares problems takes time (Tritter, 2009; Mol, 2008; also see Komporozos-Athanasiou and Thompson, 2013).
References
Barnes, M. (2008). Passionate participation: Emotional experiences and expressions in deliberative forums. Critical social policy, 28(4), 461-481.
Fudge N, Wolfe C, McKevitt C. (2008). Assessing the promise of user involvement in health service development: ethnographic study. BMJ, 336, 313-317.
Hanley, B., Truesdale, A., King, A., Elbourne, D., & Chalmers, I. (2001). Involving consumers in designing, conducting, and interpreting randomised controlled trials: questionnaire survey. Bmj, 322(7285), 519-523.
Henwood, F., Harris, R., & Spoel, P. (2011). Informing health? Negotiating the logics of choice and care in everyday practices of ‘healthy living’. Social Science & Medicine, 72(12), 2026-2032.
Komporozos-Athanasiou, A., Oborn, E., Barrett, M., & Chan, Y. E. (2011). Policy as a struggle for meaning: disentangling knowledge translation across international health contexts. Knowledge Management Research & Practice, 9(3), 215-227.
Komporozos-Athanasiou, A. and Thomspon, M. Does the Department of Health hear patient opinions? The Guardian, (02.07.13)
Martin, G. P. (2011). The third sector, user involvement and public service reform: a case study in the co-governance of health service provision. Public Administration, 89(3), 909-932.
McKevitt C, Fudge N, Wolfe C. (2010). What is involvement in research and what does it achieve? Reflections on a pilot study of the personal costs of stroke. Health Expectations, 14, 349–356.
Mol, A. (2008). The logic of care: Health and the problem of patient choice. Routledge.
Salander, P., & Henriksson, R. (2005). Severely diseased lung cancer patients narrate the importance of being included in a helping relationship. Lung cancer, 50(2), 155-162.
Tallon, D., Chard, J., & Dieppe, P. (2000). Relation between agendas of the research community and the research consumer. The Lancet, 355(9220), 2037-2040.
Tritter, J. Q. (2009). Revolution or evolution: the challenges of conceptualizing patient and public involvement in a consumerist world. Health Expectations, 12(3), 275-287.
Wright, E. B., Holcombe, C., & Salmon, P. (2004). Doctors' communication of trust, care, and respect in breast cancer: qualitative study. Bmj, 328(7444), 864.
Competing interests: No competing interests
Richards asks: “How can we get better at listening?”[1] Her personal anecdotal patient-experience in outpatients and in the consulting room parallels a recent one of my own, and, no doubt, many others`, reinforcing expectation of long waits and short, less-than-satisfactory, costly in-cubicle encounters.
The widespread waiting-room bored apathy she describes, accepting the expected, offers little hope for either her proposed revolution [2] or flowering of the fully fledged “adult patient” depicted by Chiavari and colleagues. [3] Their assessment is that the difference, when considering the choice between revolution and evolution, “is in our mind”. This is where hope lies, and where we must focus our attention, endeavouring to encourage all citizens to listen. This might lead to a change in vocabulary as the adolescent stage is slowly sloughed off, outgrowing “patient partnership”, “patient-centred”, patient-included”, and dropping altogether suggestions that “health professionals be incentivised to ….. empower patients to take on a partnering role”. [1] Empowerment is not right or appropriate: it is “a priori”. [3][4]
So, yes, I agree we do all need to get better at listening. Menkes` sensible proposal is to let the patient evolution continue. [5] His suggestion that “Widespread adoption of a collaborative middle ground for medical encounters requires ongoing cultural change on the part of doctors and patients” calls too for a change of mindset. He adds that “the examples cited by Richards and colleagues show that important developments are well under way – and hardly revolutionary.” Long may the evolution continue!
[1] Tessa Richards. How can we get better at listening? BMJ blog 16 August 2013
[2] Richards T, Montori VM, Godlee F, Lapsley P, Paul D. Let the patient revolution begin. BMJ 2013;126:14
[3] Chiavari L, Feroce I, Bonanni B, Peccatori FA. Revolution or evolution? The difference is in our mind. BMJ 2013;346:f2614
[4] Thornton H. Empowerment is inappropriate for equal citizens. BMJ 2013;346:f3573(4 June)
[5] Menkes DB. Let the patient evolution continue. BMJ 2013;346:f3554
Competing interests: No competing interests
Re: Giving the patient a "voice"
Dear Editor
Excellent news. Finally after much debate we may be giving the Patient a Voice.
Validating what they feel and How they, as the patient, have a say in their recovery/treatment.
It may take some tim for this to come full circle but it refreshing to know we got the ball rolling
Thank You
Competing interests: No competing interests