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Hi All, I wanted to share a novel way in which the complex but not complicated problem is being unravelled in a multidisciplinary, cross cultural way. It is true evidence never makes a decision but having appropriate evidence can certainly inform a decision. This is shown by a recent experience where a group of enthusiastic medical students inspired me: Dr. Biswas invited me to see how his students interacted online in an invitation only social network while learning the practice of medicine. His goal is that they would become expert decision makers and that they could interactively apply their knowledge in a safe and supported way before they faced exhausting internships on their journey to qualifications. His hope is that doctors in training could retain empathy, learn to work collaboratively and to give evidence based medicine priority in decision making for diagnosis and treatment. He hopes that a love for research, patients and a respect for collaboration will grow with them and last a lifetime. A new student asked about implications of a medical fad sweeping the nation but instead of immediately answering her query, members asked what did she find in EMBASE, Cochrane or NICE and what did research was available to support it. These students are learning to put evidence first and weigh it before application. I think this is huge and it is in stark contrast to a mental health internship I did years ago where I was locked up with the institutionalized patients with no supervision after only reading about them in my textbooks. Thankfully, somehow the patients and I survived but it was trial and error rather than evidence based! The group I refer to, Tabula Rosa asks healthcare professionals to donate cases of patients they get informed consents from and the med students of all different levels and now even nationalities work together to find the optimal diagnosis and treatment with the donating health care professional and medical school instructors acting as moderators. I was surprised to see the complexity of the cases presented. For instance I can mostly answer the continuing education vignettes for physicians online without even looking at the hints and I am not a physician but these cases were multifaceted, complex and sometimes culture specific. So far every case is addressed with excellence along with shared humour, concerns and wild guesses. These students also have a Cochrane Journal Club and they follow this up with clinical discussions on another group tagged Informer where they brainstorm how to apply best patient care with available medicine, equipment, expertise and evidence. I asked the students if they thought the interaction would make a difference to their way of learning: This was a summary of the response “I think we feel similarly about this issue. We have benefitted immensely from our interactions with subject experts like you. Not only has it influenced our clinical decisions, but it has also transformed us into advocates for evidence based medicine. EBM is indeed the need of the hour and as I had shared with you earlier, resources like the journal club are just one of the many ways in which we try to tap into the immense learning potential and unmet knowledge gap”. I share this because sometimes we underestimate the value of our own contributions given in small ways in the quest for social change and also with grateful respect for the ways the input of this forum has helped me in my own evidence based decision making journey. Best Regards, Amy Amy Price Http://empower2go.org Building Brain Potential From: Evidence based health (EBH) [mailto:[log in to unmask]] On Behalf Of Maskrey Neal Sent: 23 May 2011 04:22 AM To: [log in to unmask] Subject: Re: insolvable uncertainty and shared decision making Good morning all. I've also been lurking and listening to the debate. (I learn lots when I listen, and almost nothing when I talk.) Whilst we'd all sign up to EBM as being a key component of quality in healthcare, a few moments reflection leads inevitably to the recognition that it is a component and not a solution to the issues so well described in this string. In terms of decisions, the evidence never makes a decision. Even if there is enough clinical data to perform robust health economics, and there's a framework in the health care system to use both sets of data, there's still a decision to be made about the policy, and then potentially large numbers of individual decisions to be made in consultations between clinicians and patients about whether (or not) to adhere to that policy. Even the most centralised health care systems are a professional bureaucracy. In a traditional organisation instructions come from the board to management and onwards in a cascade system with rewards and sanctions to enforce the strategy and policies. Adherence is mostly the norm. In health care power is dispersed to individual clinicians. New evidence and policies may not be easily incorporated into such dispersed decision making, and indeed actively resisted. So this is a complex problem, not a complicated problem. Complicated problems can be segmented into stages, and solutions devised to each segment - for example, constructing a guideline or building a house. There are decisions to be made, but the technical framework is well defined. Getting evidence into practice is a complex problem with a less well defined framework - one analogy often used is raising children. Even when best practice is followed there is no guarantee of "success", and "success" may be temporary. External influences may play a more important role than the "parent", and two people exposed to the same interventions may have very different results. Complex problems improve over time, often as a result of social change. The abolition of slavery didn't happen when William Wilberforce wrote his first pamphlet or gave his first speech. There was a gradual, incremental change over many many decades as one by one people accepted that there was a better way. Attempting to fix complex problems with an approach suited to complicated problems leads to frustration. Cultural change is happening in health care. I see it every day, but I also experience the frustrations of seeing evidence not appearing in practice and the consequent poor quality care. I hear this especially when "teaching", and sometimes dramatically in the personal health care my family and friends and I receive. These behaviours are patently not because those providing care are lazy, unintelligent or uncommitted. Sometimes its hard to remember that almost none of the people making decisions that are sub-optimal set out that morning to do a bad job. So what to do? We keep going. We keep producing and critically appraising primary and secondary research, and we teach new people how to do that. We keep teaching undergrads and postgrads the skills to understand a summary of high quality evidence. We keep translating those summaries for patients. We keep working at health policy decisions and evidence-informed commissioning. But to add to those we could do a little more dissemination of the skills to share decisions optimally in consultations - and that's in most places an add-on to consultation skills training. My daughter was tested on explaining the benefits of a statin to someone at 20per cent CV risk in her med school finals last year. Is that the norm? Policy making and commissioning likewise. And of course we could also start working to teach individual and group decision making to the same audiences. Whilst we gather more evidence for that approach, its unlikely to do harm. There ain't a lot of evidence for teaching anatomy but we still do it. Teaching decision makers about decision making seems pretty sensible to me. All of these pamphlets are written. In 1984 I drove a cross a rainy Yorkshire to hear a young psychologist called David Pendleton present videos of real consultations and describe the teaching of consultations skills using such powerful material. His video camera was the size of a small car it seemed. We gave him such a hard time - "this will never catch on", "the patients will never consent", "you can't teach consultation skills" and so on. What we ought to have been saying is "This is new, we largely don't accept new stuff easily, this is pretty threatening to me but could this be important?". But we didn't. Happily others did, and look where we are now with teaching, learning, and assessing competence at consultation skills. Despair not. "Education, education education" re EBM for sure. But "culture, culture, culture" may lead to less frustration. Best to all Neal Neal Maskrey Programme Director National Prescribing Centre Liverpool UK. From: Dr. Amy Price [mailto:[log in to unmask]] Sent: Monday, May 23, 2011 04:25 AM To: [log in to unmask] <[log in to unmask]> Subject: Re: insolvable uncertainty and shared decision making This is where EBM can make a difference on every level . I can affirm that although the article cited the RNIB this organization is one in many, they are by no means an anomaly. Directors of various charities may not have the knowledge base to question the information which they are required to disseminate. When they do become informed and speak up they are fired and replaced. Funding is given for research, scholarships etc by pharmaceutical companies and special interest groups. I know of several instances where private research funding was pulled when the organization did not come up with sponsor friendly findings. Medical device companies can be in a class all their own for instance: http://minnesota.publicradio.org/display/web/2010/10/14/medtronic-settlement http://worldofdtcmarketing.com/are-fines-just-an-expense-of-doing-business-for-rx-drugs/business-of-the-drug-industry The amount they spend on retainers is staggering, it does appear they see it as easier to get forgiveness than permission...this too drives up final health care costs. I know several of these companies have former FDA executives on their staff. Insurance MD assessors in Canada and the USA are protected from accountability even though their assessments can prevent vulnerable people from receiving appropriate care. It seems that EBM could set the stage for much needed accountability so that not only is evidence based treatment applied but also evidence based diagnosis and accountability. Amy Amy Price Http://empower2go.org Building Brain Potential From: Evidence based health (EBH) [mailto:[log in to unmask]] On Behalf Of Ash Paul Sent: 22 May 2011 08:08 PM To: [log in to unmask] Subject: Re: insolvable uncertainty and shared decision making Dear Rakesh, I'm unclear where in your ecosystem of information flow do big pharma, medical device manufacturers and patient charities sit, as you have not mentioned them at all explicitly in your email. For instance, if I was blind in the UK, I would naturally turn to the largest and the most influential patient eye charity RNIB (Royal National Institute for the Blind) for support and to help me with the information flow. If I had multiple sclerosis (MS), I would turn to the MS Society as my first natural port of call. How do I (as a patient) know that the information I'm getting is biased or unbiased? The recent investigative journalism on RNIB, published by the CBS Interactive Business Network BNET reveals many interesting facts. How do facts like those uncovered by the journalists distort the inflormation flow and to what extent do they distort it? Ref: A Blindness Charity Wears Blinkers When It Comes to Pharma Cash and Cheap Drugs http://www.bnet.com/blog/drug-business/a-blindness-charity-wears-blinkers-when-it-comes-to-pharma-cash-and-cheap-drugs/8361 <http://www.bnet.com/blog/drug-business/a-blindness-charity-wears-blinkers-when-it-comes-to-pharma-cash-and-cheap-drugs/8361%20> Regards, Ash Dr Ash Paul Medical Director NHS Bedfordshire 21 Kimbolton Road Bedford MK40 2AW Tel no: 01234897224 Email: [log in to unmask] _____ From: Rakesh Biswas <[log in to unmask]> To: [log in to unmask] Sent: Sunday, 22 May 2011, 3:57 Subject: Re: insolvable uncertainty and shared decision making Thanks for this Amy. Yes this is exactly where 'User Driven Health Care' differs from 'Consumer (patient) driven health care.' For benefit of the others i repeat the bottom-line on 'user driven health-care': It is about an ecosystem where both patients and health professionals as well as others ( read audience, patient relatives, administrators) may work together as a team to drive the information flow as 'users with a user-name (often anonymous) in a connected network.' All these 'users' are autonomous in their own right and yet interdependent through a transparent and speedy though asynchronous communication medium. Your proposed solution to utilize the positive forces of 'pharma' toward evolving a mutually beneficial relationship between all 'users 'in a transparent manner could help mitigate the current dysfunctional work-flows that predispose to 'indication creep' and possibly prevent it from happening. One caveat though is that no 'money making' body or professional body focused on 'financial outcomes' rather than 'Academic learning outcomes' can be expected to be completely transparent and there may be hidden agendas that could prove counterproductive in the long run? :-) warm regards, rakesh On Sun, May 22, 2011 at 1:11 AM, Dr. Amy Price <[log in to unmask]> wrote: Dear Dr Paul and Dr Biswas and others, I am wondering if User Driven HealthCare could in fact be taken one step further. Can Users also be Givers? Rather than seeing patients as consumers or users could they not also be engaged as intelligence, public relations and in their view of policy implementation at the ground roots? It is challenging for individual medical providers to stand up to insurance misconduct and pharma care abuses. For example an example was given of a pharmaceutical that had reasonable success for a very limited population. After results were published rates were hiked to unreasonable rates but NHS was duty bound to honour the commitment for care after research to those limited few at the expense of others as health care funds are finite. There were no consequences that I could see to this company other than they made good money off the lives of defenceless others. In the USA to work with a team using genomics bio markers, psych and med profiles etc in addicts in institutional care ( a population who ticks off all the vulnerability boxes) I was compelled to take all the bio ethic modules (40 of them). I was alarmed to see that this same drug company as described above was a respected major sponsor. I asked if there was a way to boycott this and take training elsewhere do to the fact that I was uncomfortable learning ethics from a group who clearly overstepped ethical boundaries. They laughed and advised me to get a grip and get over it if I ever wanted to see my name on a decent sized grant.... I wish I could say that I bravely stood my ground and did research elsewhere, I did not, and now add credibility to a sponsor that does not deserve it. In South Africa, rural areas were dying through lack of medical care, resources and training. Users were brought in, given minimal training and teamed up with medical mentors . The medical care while not perfect exists, there were fewer preventable deaths and communities saw themselves as a team rather than giver versus user. Disreputable companies often use patients as human foils to shield themselves from FDA reprisals or accountability quite effectively. The standard lines are big pharma is out to bankrupt us, we are a threat, your MD is not current but we know science, the NHS or whoever only cares about the bottom line, theirs etc. How much more effective if these users were instead marshalled to work with the forces that drive healthcare than used against it Amy From: Evidence based health (EBH) [mailto:[log in to unmask]] On Behalf Of Ash Paul Sent: 20 May 2011 05:13 AM To: [log in to unmask] Subject: Re: insolvable uncertainty and shared decision making Dear Rakesh, Prof Bernstein has himself referred to the concept of what I call 'patient-driven' healthcare (which is becoming increasingly more common and more worrying) without actually defining it in those terms, in his Bioethical Blog on 24th April 2011: The Physician Selling, The Patient Buying: Should Patients be Considered Consumers in a Medical Care Market? http://bioethicsdiscussion.blogspot.com/2011/04/physician-selling-patient-buying-should.html I've copied Maurice into this email as well. Regards, Ash Dr Ash Paul Medical Director NHS Bedfordshire 21 Kimbolton Road Bedford MK40 2AW Tel no: 01234897224 Email: [log in to unmask] From: Rakesh Biswas <[log in to unmask]> To: [log in to unmask] Sent: Friday, 20 May 2011, 6:47 Subject: Re: insolvable uncertainty and shared decision making Thanks Maurice. :-) regards, rakesh On Fri, May 20, 2011 at 10:06 AM, Maurice Bernstein, M.D. <[log in to unmask]> wrote: I think the coin is a correct image regarding patient autonomy and physician paternalism. To me, the best result of a patient-doctor interaction is that those on each side of the coin should be contributing to the direction of the final result, essentially where the coin is finally going to be distributed. ..Maurice. Maurice Bernstein, M.D. Associate Clinical Professor of Medicine Keck School of Medicine University of Southern California "Bioethics Discussion Blog" http://bioethicsdiscussion.blogspot.com <http://bioethicsdiscussion.blogspot.com/> -----Original Message----- From: Rakesh Biswas <[log in to unmask]> To: [log in to unmask] Sent: Thu, May 19, 2011 8:33 am Subject: Re: insolvable uncertainty and shared decision making Thanks Ben and Ash for this timely article on 'indication creep' in JAMA which was definitely an excellent extension of the discussion that we enjoyed in the past few months and thanks Mayer for pointing it out. On Ash's point about patient driven health care it must be recognized that health care practically can never be just patient-driven as long as there are health professionals and other stakeholders representing other equally ( if not more) vital forces that drive health care. As Maurice Bernstein from 'Bioethics International' puts it ( although i can't be sure if this was exaclty what he meant..copying it to him as well for clarification), possibly patient autonomy and 'health professional paternalism' are two sides of the same coin? What health care possibly requires is transparency in 'information flow' that can create a democratic ecosystem (which Ben seems currently resigned to accept as the only workable solution)? This may improve health outcomes in direct proportion to the heightened shared learning between all these stakeholders? :-) warm regards, rakesh On Thu, May 19, 2011 at 2:37 AM, Ash Paul <[log in to unmask]> wrote: Dear Ben and Mayer, I agree with you both that patient centred care means involving patients in shared decision-making. Infact there is a major work-stream on this topic in the NHS led by Dr Steve Laitner with Neal Maskrey from this Group having a big input into the group. As a commissioner of healthcare, I'm all for shared decision making and all for patient centred care. However, I do have qualms about patient-driven health care. Inadequately knowledgeable patients getting distorted/wrong information from the wrong sources may want healthcare but that does not automatically mean that they need it. In a finitely funded and publicly funded healthcare system like the NHS, it is very important to distinguish between healthcare needs and healthcare wants, otherwise we will end up with financial insolvency. I have written in somewhat detail about this issue in a previous email to this group. I've just been reading a financial report from the USA that at the present rate of healthcare spending, the US Medicare Hospital Fund will become bankrupt by 2024, a full 5 years earlier than originally predicted (https://www.cms.gov/ReportsTrustFunds/downloads/tr2011.pdf). Clinicians all over the world absolutely need to grasp the nettle and start spending healthcare monies rationally and with circumspect, while at the same time involving their patients in all aspects of decision-making. They are still recognised with respect by the general public as the wise stewards of healthcare resources. Because if they don't, in the face of healthcare bankruptcy, they will have politicians and faceless bureaucrats like myself telling them what to spend treatment monies on. And then they will only have themselves to blame for their fall from grace. Both Ben and I would like to express our gratitude to the members of this group, whose thoughts on these issues we have tried to distill into this JAMA article. In the article itself, we have also acknowledged the valuable contribution of this group. The JAMA article can be accessed at: http://jama.ama-assn.org/content/305/19/2005.full Regards. Ash Dr Ash Paul Medical Director NHS Bedfordshire 21 Kimbolton Road Bedford MK40 2AW Tel no: 01234897224 Email: [log in to unmask] From: "Djulbegovic, Benjamin" <[log in to unmask]> To: [log in to unmask] Sent: Wednesday, 18 May 2011, 12:38 Subject: Re: insolvable uncertainty and shared decision making Dear Mayer Thanks for reading the paper. Since, as pointed out in our article, the problems that arise from irreducible uncertainty-->inescapable errors--> unavoidable injustice belongs to a class of the problems that do not have adequate technical solutions, I indeed believe that shared decision-making (at individual AND most importantly at societal level) is probably the only way to minimize the consequences of imbalance between false positives vs. false negative decisions. It is like democracy- it is not perfect, but because we tend to understand the rules of the game ( and don't see an alternative to it), most of us embrace it. Ash may wish to add to my response best Ben On May 18, 2011, at 12:23 AM, "Mayer Brezis" <[log in to unmask]> wrote: Dear Ben: Thank you for your superb paper in the current issue of JAMA: From Efficacy to Effectiveness in the Face of Uncertainty. Indication Creep and Prevention Creep. My question to you: in the face of insolvable uncertainty, don't you think that shared decision making might be one potential solution to reduce overuse (as shown by empiric evidence – see recent BMJ discussion http://www.bmj.com/content/342/bmj.d2117.full) while respecting individual's anxious request for more – also in a more just distribution of care? Best, Mayer Mayer Brezis, MD MPH Professor of Medicine Director, Center for Clinical Quality & Safety Hadassah Hebrew University Medical Center Jerusalem, Israel Office phone 02-6777110 Cellular 050-787-4596 Fax 02-643-9730 www.hadassah.org.il/departments/quality