Big clinical and research issues: an (ex) editor’s

viewRichard Smith

UnitedHealth EuropeFormerly editor, BMJ

The next 45 minutes of your life

•What are the big issues?•The four I’ve chosen to talk

more about

“Lift up your hearts”

• First, lift up your hearts• What you do is very important: you are researching

where most of the patients are—and yet where research was until copmparatively recently weak

• Story of the BMJ and primary care research– 1979: not much of it– 1991: GP hanging committee– 1990s: better quality research; professional researchers;

multidisciplinary– 2004: much of our best studies are from primary care; the

methods developed in primary care have spread back into hsopital based research

Big clinical questions for researchers

• How safe is primary care? How could it be made safer?• How can we best respond to inequalities in health in

primary care?• How can we best manage patients with long term

illness?• What is “a good death?” How can we help patients

achieve one?• How can we best empower (or at least not disempower)

patients and encourage partnership?• Sharing information on risk

Big clinical questions for researchers

• How useful are N of 1 trials in routine primary care? Should they be used more? If so, how might we make that happen?

• Domestic violence in primary care: How common is it? How is it best detected? What is the best response?

• How to improve the detection and treatment of heart failure in primary care?

• What is the role of family doctors in preventing and treating chronic fatigue syndrome?

Maybe less of…..

• Depression in primary care• Hypertension in primary care

• Are these studies so common because drug companies will fund them?

Big clinical questions for researchers

•  How many “old wives’ tales” are evidence based?

• How effective is reassurance?• Can we improve the evidence base for treating

children’s problems in primary care?• Which forms of complementary medicine work in

primary care and how might they best be used?• Trust: What is it? What builds it?• Are we medicalising more of life’s problems? Is

this a good or bad development?

Big service questions for researchers

• What is the role for e-consultations in primary care?

• Decision support in primary care: What is it? Which forms will be used? How can it produce improvement?

• Electronic patient records: How acceptable are they to patients and doctors? What’s the best form? How can they improve care?

• Will paying GPs for performance produce better outcomes for patients?

Big service questions for researchers

• What is the optimum skill mix in primary care? Who should do what?

• What is the most valuable work of family physicians?

• What is the optimum pattern of work for family physicians? (But no more studies of “stressed doctors”)

• Economic evaluations of the activities of primary care: what’s cost effective?

• What is a good doctor and how can you make one?

Big research questions for researchers

• How can we best get the results of research into practice?• How best to move from evidence (or the lack of it) to

recommendations?• Do we need to increase our methodological range? If so, how

do we do it?• Research misconduct: What is it? How common is it? What’s

the best response?• Does conflict of interest matter in primary care research? If it

does, what is the best response?• Will we have to change the way we publish research and

inform doctors? • How can we best involve patients in the planning and

execution of research?

Five topics to flesh out

• What is “a good death?” How can we help patients achieve one?

• How can we best manage patients with long term illness?

• Will paying GPs for performance produce better outcomes for patients?

• Research misconduct: What is it? How common is it? What’s the best response?

• Will we have to change the way we publish research and inform doctors?

In search of a good death

In search of a good death

•“The art of living well and dying well are one.”

•Epicurus

Montaigne on death

• "To begin depriving death of its greatest advantage over us [surprise] ... let us have nothing more often in mind than death.”

• “To practise death is to practise freedom.”

• “Your death is part of the order of the universe; it is a part of the life of the world.”

• “Death is one of the attributes you were created with; death is part of you. Your life’s continual task is to build your death.”

• “Make way for others as others did for you ... imagine ... how much more painful would be a life which lasts for ever."

• “One should be ever booted and spurred and ready to depart.”

Death now

• “In Glasgow, where I was born, death was seen as imminent. In Canada, where I trained, it was thought inevitable. In California, where I live now, death is considered optional.”

Research questions

• What is a good death?• How do people die now? [We know where, when, at

what age, and what of, but we know little about how]• How can the health care system help people die

without medicalising a natural and important experience?

• How can we diagnose dying better?• How can we transfer best practice from a hsopice to

other settings and to non-cancer patients?• Could a business case be made for a good death?

“Debate of the age”

• “We believe it is time to break the taboo and to take back control of an area [death] which has been medicalised, professionalised, and sanitised to such an extent that it is now alien to most people’s daily lives.”

Principles of a good death

• To know when death is coming, and to understand what can be expected

• To be able to retain control of what happens• To be afforded dignity and privacy• To have control over pain relief and other

symptom control• To have choice and control over where death

occurs (at home or elsewhere)• To have access to information and expertise of

whatever kind is necessary

Principles of a good death

• To have access to any spiritual or emotional support required

• To have access to hospice care in any location, not only in hospital

• To have control over who is present and who shares the end

• To be able to issue advance directives which ensure wishes are respected

• To have time to say goodbye, and control over other aspects of timing

• To be able to leave when it is time to go, and not to have life prolonged pointlessly

What is a good death?

• We all have different ideas on a good life. We will probably have different ideas on a good death

• “Suddenly, in bed with my favourite catamite.”• “Violently, in battle.”• “By my own hand at my own time.”• “Peacefully, with my family around me, rain on

the window, listening to Bach solo cello suites.”

How best to manage patients with long term

illness?

Chronic disease (or long term illness)

• Chronic disease is disease that can be controlled but not cured

• Includes not only diabetes, hypertension, dementia, obesity, depression, arthritis, and the like but also many cancers and AIDS

• Affects 17.5m people in Britain• Around 45% of those patients have more than one

disease• Many, perhaps most, patients have additional social

and psychological problems—which is why long term illness is a better term than chronic disease (Plus chronic disease is an unclear term for the public)

Burden of long term illness

• About three quarters of those over 75 have long term illness, and the figure continues to rise

• Accounts for 80% of GP consultations and 60% of hospital bed days in the UK

• Two thirds of medical emergency admissions are caused by exacerbations of chronic disease or occur in patients with chronic disease

• In the US patients with chronic disease account for 78% of health costs

A few patients with complex conditions account for many hospital bed days

Copyright restrictions may apply.

Yach, D. et al. JAMA 2004;291:2616-2622.

Chronic disease is increasing

Long term illness is not well managed

• Many treatments do not follow the best evidence (“rule of halves”)

• Care is rushed and too dependent on patients initiating it

• Doctors and nurses devote little time to assessing function, advising on self care and behavioural change, or addressing functional, social, and psychological needs

• Care is fragmented with little care across providers

• Mathematica Policy Research Inc review for US Federal Government

Long term illness is not well managed

• “"In effect, we're practising 19th century medicine in the 21st century. Most health care is concerned

with patients with chronic disease, particularly as they age, and yet we still have a system built around individual care events, like office visits and hospital admissions. The epidemiology is out of synch with the system. We need chronic disease management." Bob Kane

                                                                                   

NHS conception of a model for managing patients with long term conditions

Evercare view on what works

• Stratifying patients by risk • Comprehensive assessment (including non-

medical issues that affect outcomes)• Interdisciplinary team care planning• Evidence-based interventions• Coordination of care across all sites of care• Effective links to doctors and other providers• Effective self-care and carer education and

training• Using all community resources• Rigorous monitoring

Research questions

• What is the optimal system for managing patients with long term illness?

• How best to manage the different groups of patients--from those with a single illness through to those with multiple illnesses and complex psychosocial problems?

• How can the components of the system be optimised--particularly risk stratification, data management and advanced care planning?

• Who should deliver which components of care?• How can health systems be encouraged to change

quickly?

Will paying general practitoners for

performance produce better outcomes?

“A bold (but unevaluated?) experiment”

• From April 2004 general practices in Britain are paid in part for performance

• A doctor may be able to earn about $80 000 more per year through optimum performance

• “An initiative to improve the quality of primary care that is the boldest such proposal attempted anywhere in the world.” P Shekelle, BMJ 2003

How it works

• A points system with 1050 points, each worth £120

• 550 for clinical indicators• 36 points for preventive activities• 184 for organisational indicators• 100 for experience of patients• 50 points for access• 130 for scoring highly everywhere “To those

who hath shall be given….”

Roland, M. N Engl J Med 2004;351:1448-1454

Clinical Indicators and Assigned Points in the Quality and Outcomes Framework

Roland, M. N Engl J Med 2004;351:1448-1454

Examples of Clinical Indicators and Assigned Points for Patients with Ischemic Heart Disease

Research questions

• Will it produce better care for all patients?• Will it work against the disadvantaged?• How will it change the nature of general practice?• Will it distort care, causing doctors to concentrate

on what “scores”?• Will it discourage holistic care?• Will it fragment care?• Will professional motivation be damaged?• NOT “Will doctors respond to money?” We know

they do.

A clear article on all of this

Martin Roland. Linking physicians’ pay to the quality of care--a major experiment in the

United Kingdom.NEJM 2004;351: 14.

Research misconduct

Research questions

•What are the forms of research misconduct?

•Why does it happen?•How can it be detected?•How can it be prevented?

Analysis of the first 103 cases dealt with by the Committee on

Publication Ethics (COPE)

• Redundant publication 29• Authorship 18• Falsification 15• No informed consent 11• Unethical Research 11• No ethics committee approval 10• Fabrification 8

COPE cases

• Editorial misconduct 7• Plagiarism 4• Undeclared conflict of interest 3• Breach of confidentiality 3• Clinical misconduct 2• Attacks on whistleblowers 2• Reviewer misconduct 1• Deception 1

• Failure to publish 1• Ethical questions 11

What is the relation of minor to serious research misconduct?

What is the relation of minor to serious research misconduct?

What causes research misconduct?

• Question: How do you win a Nobel prize?

• Answer: Work with somebody wh has already won one/

• Could it be the same for research misconduct?

• Research methodology to answer the question: Extended case report/novel

Changing the way we publish research and

inform doctors

Change = Burning platform x Vision x

Next steps

The burning platform

We are failing to meet the information needs of

doctors but driving them mad with what we are

doing

Current problems

• Think of all the information that you might read to help you do your job better.

• How much of it do you read?

00.1

0.20.3

0.40.5

Lessthan 1%

1%-10% 11%-50%

51%-90%

Morethan90%

Amount read

Perce

ntage

Series2

Series1

Current problems

• Do you feel guilty about how much or how little you read?

Do you feel guilty about how much or little you read?

Yes

No

Yet lots of evidence that doctors can’t find the information they need

when they need it

Words used by 41 doctors to describe their information

supply• Impossible Impossible

Impossible Impossible Impossible Impossible

• Overwhelming Overwhelming Overwhelming Overwhelming Overwhelming Overwhelming

• Difficult Difficult Difficult Difficult

• Daunting Daunting Daunting• Pissed off• Choked• Depressed• Despairing• Worrisome

• Saturation• Vast• Help• Exhausted• Frustrated• Time consuming• Dreadful• Awesome• Struggle• Mindboggling• Unrealistic• Stress• Challenging Challenging

Challenging• Excited• Vital importance

The information paradox:Muir Gray

• Doctors are overwhelmed with information yet cannot find the information they need

Information paradox

• “Water, water, everywhere

• Nor any drop to drink”

• The Rime of the Ancient Mariner

What’s wrong with medical journals

• Don’t meet information needs• Too many of them• Too much rubbish• Too hard work• Not relevant• Too boring• Too expensive

What’s wrong with medical journals

• Don’t add value• Slow every thing down• Too biased• Anti-innovatory• Too awful to look at• Too pompous• Too establishment

What’s wrong with medical journals

• Don’t reach the developing world• Can’t cope with fraud• Nobody reads them• Too much duplication• Too concerned with authors rather

than readers

MoneyWhat does the research community do?

• Do the research, often funded by public money, often costing millions

• Hand over the copyright to the journals• Do the editing, often unpaid• Do the peer review, almost always unpaid• Often do the technical editing, often unpaid• Buy the journals, often at inflated prices, some cost

$15 000• Read the journals• Store the journals

MoneyWhat do the publishers do?

• May own the journals, although often they don’t• Manage the process• Lend the money to keep the process going• Design - usually minimal• Typeset, print, and distribute the journal• Market the journal - but often to libraries that have to

have them• Sell reprints - sometimes for $250 000 a time (nothing

to authors or funders of the research); can almost sell themselves

• Sell advertising - often none

Money

• Money paid by all academic libraries per article for access to only those libraries that have paid

• $5000• Money paid by authors per article for

whole world to have access• $1500

Balkanisation

• If you are a gastroenterologist the research that might matter to you may be in 30 different journals

• The difficulty of doing systematic reviews• Important research articles are all over the

place, some in Pubmed, many not• Even if you can find the stuff, it costs a fortune

to gather it all together (systematic review on research misconduct -£2000 to get photocopies)

Slowness

• For many journals the time between submission and publication is over a year--unacceptable

A vision of something better

A vision of something better

• "It's easy to say what would be the ideal online resource for scholars and scientists: all papers in all fields, systematically interconnected, effortlessly accessible and rationally navigable, from any researcher's desk, worldwide for free.” Stevan Harnad

A vision of something better

• If you have an apple and I have an apple and if we exchange these apple then you and I will still each have one apple. But if you have an idea and I have an idea and we exchange these ideas, then each of us will have two ideas. George Bernard Shaw

Next steps

Next steps

•Author/institution pays model

•Biomed Central•Public Library of Science

“The thing” that will save us

• Able to answer highly complex questions • Connected to a large valid database• Electronic - portable, fast, and easy to use• Prompts doctors - in a helpful rather than

demeaning way• Connected to the patient record• A servant of patients as doctors• Responds to the need for psychological

support and affirmation

Conclusion

• Your lives are full of excitement and opportunity

• I hope that I haven’t bored you• “If you’re not confused you

don’t know what’s going on”