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
Sent: 20 May 2011 05:13 AM
Subject: Re: insolvable uncertainty and shared decision making
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.
Dr Ash Paul
Medical Director
NHS Bedfordshire
Thanks Maurice.
:-)
regards, rakesh
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.
-----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
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:
Dr Ash Paul
Medical Director
NHS Bedfordshire
Subject: Re: insolvable uncertainty and shared decision making
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
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?
Mayer Brezis, MD MPH
Professor of Medicine
Director, Center for Clinical Quality & Safety
Hadassah Hebrew University Medical Center
Jerusalem, Israel