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
Regards,

Ash

Dr Ash Paul
Medical Director
NHS Bedfordshire

21 Kimbolton Road

Bedford

MK40 2AW

Tel no: 01234897224

 

 



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

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?

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

 

 

 

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

 

-----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:

 

 

Regards.

 

 

Ash

Dr Ash Paul
Medical Director
NHS Bedfordshire

21 Kimbolton Road

Bedford

MK40 2AW

Tel no: 01234897224

 

 

 

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