Purely anecdotal, but take a look at Act Two. Every Cat Scan Has Nine Lives

http://www.thisamericanlife.org/radio-archives/episode/391/transcript

Not all patients respects the EBM process.

Helena

Helena M. VonVille, MLS, MPH
Library Director
University of Texas School of Public Health
Houston, TX
[log in to unmask]<mailto:[log in to unmask]>
713-500-9131
713-500-9125 (fax)
________________________________________
From: Evidence based health (EBH) [[log in to unmask]] On Behalf Of Hilda Bastian [[log in to unmask]]
Sent: Wednesday, May 08, 2013 6:10 PM
To: [log in to unmask]
Subject: Re: EBM and Person-centred care - can you have one without the other?

Well, yes, I sort of am. I assume it is having some of the effects we intended, and some we didn't anticipate - some of which may be beneficial, some of which may be harmful. In relation to this question about patient-centered care, there's the issue of what was the impact on patient choice: better? worse? no different? Is it a driver for inequity within healthcare practice, as the best off get more time with their doctors leaving less for everyone else? That is, is 'inverse care' better, the same, worse - or just different but not appreciably better or worse, and what role has EBM paid in that?

Hilda



On Wed, May 8, 2013 at 7:00 PM, Makretsov, Nikita [PH] <[log in to unmask]<mailto:[log in to unmask]>> wrote:
It’s certainly interesting point-: whether the base of evidence- i.e. whether quality or poor quality research is making difference?
I hope you are not asking this.

Nik
________________________________
From: Hilda Bastian [mailto:[log in to unmask]<mailto:[log in to unmask]>]
Sent: Wednesday, May 08, 2013 3:42 PM
To: Makretsov, Nikita [PH]
Cc: [log in to unmask]<mailto:[log in to unmask]>
Subject: Re: EBM and Person-centred care - can you have one without the other?

Hi - I meant has anything changed at system level evidence about the effects of EBM systems. Those books don't address that.

If EBM is all about the proof, then it should be ok to talk about evidence for EBM itself (and aspects of it), and not only be interested in selected positive anecdotes. Anecdotes can illustrate a point, but they don't answer the questions I was raising. Anecdotes can always be countered with other anecdotes showing the opposite. All that requires for the scales to come up even is to have a devil's advocate who knows plenty of stories too.

I'd really like to see if there's a good evidence base now: when we tried to find it in 2004, we came up short - long on good arguments, but short on actual proof. Absence of evidence doesn't mean something isn't true as ever - I'd just like to know if the evidence base is better than it was a decade ago. It's like the argument that HTA would save health systems money: seemed logical. Didn't necessarily always work out that way, though.

Hilda

On Wed, May 8, 2013 at 5:21 PM, Makretsov, Nikita [PH] <[log in to unmask]<mailto:[log in to unmask]>> wrote:
Hilda

To say that nothing has changed since 2004 is quite a bit of an overstatement. EBM is a norm today. Modern medicine is indeed becoming evidence-based, and major decisions in the future will have to be based on best quality evidence, not on any kind of evidence (esp when large and expensive interventions like vaccination, screening, new drugs are getting paid by the expense of tax payers. The fiascos like Tamiflu should not repeat at the expense of our taxes. The evidence is now being graded explicitly based on quality of the original research, and not only on venue of publication and impact factor. To hide the evidence is becoming a crime ! Does any of us is entitled to know that hard selling treatments indeed work? Or we have to believe that they work only because the industry is telling us so based on their “undisclosed” research data? The EBM is all about the proof.

I only can refer to Testing Treatments (http://www.testingtreatments.org/ ) and Bad Science (www.badscience.net<http://www.badscience.net/>) for a compelling “evidence of evidence” and the further references. Any anecdotes should be reserved for non-medical press, as we live in a democratic world.


Nik
Vancouver,
________________________________
From: Evidence based health (EBH) [mailto:[log in to unmask]<mailto:[log in to unmask]>] On Behalf Of Hilda Bastian
Sent: Wednesday, May 08, 2013 1:06 PM
To: [log in to unmask]<mailto:[log in to unmask]>
Subject: Re: EBM and Person-centred care - can you have one without the other?

G'day!

I think there's always been a tension, and it's always been a debate. When I first became involved in this area I was a consumer advocate, and my interest was also to a large extent based on my concern.

Certainly, my concerns were one of the main reasons I got involved in establishing the Cochrane Collaboration a couple of decades ago: I had hopes of playing a role into reducing the harm to consumer choice arising from people losing access to services because of one (or a few) researchers' subjective judgments & interpretations of evidence. That's one of the consequences of those upstream applications of evidence. I wrote something about whether consumers and EBM were allies or enemies<https://www.mja.com.au/journal/2000/172/1/allies-or-enemies-evidence-based-medicine-and-consumer-choice?0=ip_login_no_cache%3D7074101b7247589113a9b6b920803bcc> many years ago - came then to the position that it could go either way. It depended on how patient-centred the evidence is, to a large extent, I think.

We don't really know whether the results of EBM are beneficial: we believe it and assume it's better than the alternative, but that itself has not been tested. There are plenty of visible adverse effects<http://www.ncbi.nlm.nih.gov/pmc/articles/PMC524578/> - sometimes practice wheeling about in this direction and that in response to evidence, ending up back where non-EBM practitioners always were, for example. But people usually concentrate on the anecdotes of harm from NOT being evidence-based, and quote anecodotal cases where EBM helped. On balance, we just believe it's logical to assume that there's a net benefit because science is meant to be self-correcting. But we don't know that, because systematic reviews themselves can at times end further scientific enquiry or channel it certain ways.

Whether EBM as a system was evidence-based was discussed a lot in conjunction with a special BMJ issue in 2004: at the time, I think the consensus was that we didn't have an evidence base for the system. I don't think that's changed, has it? Certain aspects are tested in RCTs (often without the hoped-for results), but not the whole. I'm not saying it needs to be, but its effect on either making medicine more or less patient-centered would certainly be one of the outcomes of great interest.

Hilda






On Wed, May 8, 2013 at 7:42 AM, Neal Maskrey <[log in to unmask]<mailto:[log in to unmask]>> wrote:
>> I would like to argue that person-centred care is at the centre of the EBM definition but EBM is not explicitly within definitions of person-centred care.

Good question!

Is this reasonable? Yes!

But I’ve always found patients and the public entirely receptive to incorporating evidence into person-centred decision making about their care. After all, what is the alternative?
What I might gently add is that it seems to me there are 4 settings to get from evidence / information to informed individual decision making.

The settings, sequentially  I’d name as research, national guidance, local policies, and individual decision makings (RNLI).

EBM/P has focussed huge efforts at the first translation from research to “national guidance”. Discussions on this group are dominated by this – and very helpful they are. However, there is relatively little effort expended on the second translation from that guidance into local policies. Then there’s a relatively small amount of effort going into supporting evidence-based, shared decision making at the individual consultation level, but this is miniscule compared with the guidelines and technology appraisal effort. As Kev says, the issue is recognised but we still are woefully short on the “how to do it”. Adoption of evidence is arguably limited by this skewed effort, and by the lack of recognition that it takes a lot more than the first translation.

I think that RNLI model is useful, at least to me, when thinking about the journey from evidence to individual care. Each of the settings have their own paradigm - and translations to help move through what is often a far from an orderly, logical and sequential progression each require (very) different approaches, skills, attitudes, tools etc.

Good luck with linking the EBM paradigm with the patient centred paradigm. Do let us know how you get on!

Best wishes


Neal
Professor Neal Maskrey
Consultant Clinical Adviser, Medicines and Prescribing Centre
National Institute for Health and Care Excellence
Ground Floor Building 2000 Vortex Court | Enterprise Way | Wavertree Technology Park | Liverpool L13 1FB | United Kingdom
Tel: +44 (151) 353 7729<tel:%2B44%20%28151%29%20353%207729> | Fax: +44 (151) 220 4334<tel:%2B44%20%28151%29%20220%204334>
Honorary Professor of Evidence-informed Decision Making, Keele University, Staffordshire. ST5 5BG.

Web: http://nice.org.uk<http://nice.org.uk/>





From: Evidence based health (EBH) [mailto:[log in to unmask]<mailto:[log in to unmask]>] On Behalf Of k.hopayian
Sent: 08 May 2013 08:13
To: [log in to unmask]<mailto:[log in to unmask]>
Subject: Re: EBM and Person-centred care - can you have one without the other?

Hi Phyll,
There is the Sicily Statement<http://www.biomedcentral.com/1472-6920/5/1> which includes an explicit statement that those receiving care should be the ones who make decisions with clinicians seen as a resource of information. That puts patients at the centre of care. We debated the use of the term patient-centred but dropped it in the end because we were informed that (back then) there was not an equivalent in some languages.
Evidence-Based Practice (EBP) requires that decisions
about health care are based on the best available, current,
valid and relevant evidence. These decisions should be
made by those receiving care, informed by the tacit and
explicit knowledge of those providing care, within the
context of available resources.
What the statement leaves out is HOW.

Dr Kev (Kevork) Hopayian, MD FRCGP
General Practitioner, Leiston, Suffolk
Hon Sen Lecturer, Norwich Medical School, University of East Anglia
Primary Care Tutor, East Suffolk
RCGP Clinical Skills Assessment examiner
http://www.angliangp.org.uk/

On 7 May 2013, at 16:51, Phyll Buchanan <[log in to unmask]<mailto:[log in to unmask]>> wrote:

Dear all,

This list has helped me many times, thank you.

I am about to do a presentation and would like some help in thinking this through - and I would really like some critical feedback before I do this for real.

At a previous research conference we challenged experienced researchers, working in the field of person-centred care, to be clear about their definitions, in order to help us understand the findings and perhaps incorporate them into our work.

My colleague and I are tutors with a voluntary organisation which provides breastfeeding support to new mothers, so already feeling a bit overawed when our challenge was accepted and  we were invited back to present our own thoughts on defining person-centred care. The deadline is getting close - about a month away.

Now I know more about evidence-based healthcare I realise they were not using reporting techniques familiar to this list. So, if we are to do a decent presentation, it means showing this distinguished, but perhaps sceptic, audience the relevance of evidence-based healthcare for their work as well as explain our understanding of person-centred care.

Taking this challenge further, and having looked at the definitions pasted below, I would like to argue that person-centred care is at the centre of the EBM definition but EBM is not explicitly within definitions of person-centred care.

Is this reasonable?

I would then like to explore methods of testing whether care given is perceived by the person at the receiving end as both evidence-based and person-centred.


I will follow-up the leads given by Hudon ( 2011) on appropriate measurement tools but would be very grateful if anyone knew of any existing work testing how patients experience EBM care?


Definitions

EBM definition (Straus, 2011:1)
Evidence-based medicine (EBM) requires the integration of the best research evidence with our clinical expertise and our patient’s unique values and circumstances.
Values are defined as … unique preferences, concerns and expectations each patient brings to a clinical encounter and which must be integrated into clinical decisions if they are to serve the patient.

Person centred care
Duncan seems the closest with the inclusion of effective care.
“Responsive to individual personal preferences, needs and values and assuring that patients values guide all clinical decisions”
Scottish Government (2010) Healthcare Quality Strategy (cited by Duncan, 2011)

‘Health care services and staff: Have characteristics that equip them to deliver consistently good care; act in ways that show they are willing and competent to attend to my health and care needs, and respect me as a person as they do so; and enable me to be and do what I value being and doing within and beyond my health care encounters’. (Entwistle, 2012)

…the patient needs to perceive that his or her individual needs and circumstances are at the heart of the clinical care he or she receives… (Hudon, 2011)


Phyll

My background: I am completing my MSc in Evidence-based Healthcare which has transformed my thinking, I was a nurse many years ago, co-founded a voluntary organisation 17 years ago and am involved in training women to become peer supporters for new mothers.


Duncan, E. (2011) Person Centred Care : what is it and how can it be improved? : University of Stirling.

Entwistle, V., Firnigl, D., Ryan, M., Francis, J. & Kinghorn, P. (2012) Which experiences of health care delivery matter to service users and why? A critical interpretive synthesis and conceptual map. J Health Serv Res Policy. 17, 70-8.

Hudon, C., Fortin, M., Haggerty, J. L., Lambert, M. & Poitras, M. E. (2011) Measuring patients' perceptions of patient-centered care: a systematic review of tools for family medicine. Ann Fam Med. 9, 155-64.

Straus, S. E., Glasziou, P., Richardson, S. W. & Haynes, R. B. (2011) Evidence-based medicine: how to practice and teach it. London, Churchill Livingstone /Elsevier.



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