Health and Society Flashcards
What is patient confidentiality?
The principle of not divulging information about patients to others (sometimes qualified with ‘without the patient’s consent’)
Why respect patient confidentiality?
Central to establishing trust Ensures information is not disclosed to the wrong people Respects patients' autonomy A legal requirement A professional obligation
Is sharing patient information with those involved in their care considered a breach of confidentiality?
An important part of providing proper care and treatment
In many cases we would be reluctant to say that the sharing of information with such people constitutes a breach of confidentiality
This is recognised by the GMC - assumes implied consent unless patient has objected
What is a breach in confidentiality?
A breach of confidentiality occurs if information is shared with other people without the consent of the patient in question
What is a breach in confidentiality?
A breach of confidentiality occurs if information is shared with other people without the consent of the patient in question
When is it justified to breach confidentiality?
In the public interest
To prevent serious harm coming to another person
- e.g. sexual contacts of serious communicable disease
Disclosures required by law
Can confidentiality be broken if it is considered in a patient’s best interest?
General rule is that doctors should abide by a competent adult patient’s refusal to consent to sharing of information, even if doing so put the patient at risk of serious harm
But:
- Disclosure may be justified if gaining consent is not practicable
- Confidentiality can/should be broken if in patient’s best interests and the patient lacks capacity of is a child
What is a market and how may they exist in healthcare?
A market is a means by which the exchange of goods and services takes place as a result of buyers and sellers being in contact with one another, either directly or through mediating agents or institutions
Markets exist in healthcare even when gods and services are not traded directly (patients rarely pay out of pocket)
Even publicly financed (and provided) systems like the NHS have buyers (commissioners) and sellers (providers) of health care
Many private companies, local and global, supply the NHS: pharmaceutical industry, medical devices etc.
What if a doctor decides to share information?
Use anonymised or coded information if practicable and serves purposes
Get patient’s express consent if identifiable information is to be disclosed for purposes other than their care or local clinical audit, unless disclosure is required by law or can be justified in public interest
Keep disclosures to the minimum necessary
Keep up to date with, and observe, all relevant legal requirements
What are activities of daily living?
Include every day tasks
Functional activities
Essential part of life
Can be assessed, measured & monitored
How can activities of daily living be categorised?
Personal
Locomotion
Domestic/work
Leisure
What are examples of activities of daily living?
Tying up shoelaces Getting in and out of chair Walking to the shop Walking upstairs Getting in and out of a bath Making a cup of tea Turning a key in a door
What is altruism?
Regard for others as a principle of action
You may care for another as a fellow human, and also because of expected reciprocity if you are in need
‘Disinterested and selfless concern for the well-being of others’
How are markets regulated?
All markets, both public and private, are regulated by explicit and implicit rules (e.g government legislation, professional regulations and ethics)
No such thing as a ‘free market’ in any sector, not just health
Exchange or trading may be based not only on incentives and regulation but also on trust
How are trust and altruism related to blood and organs?
Altruism is the basis of donor schemes for blood and organs - is it efficient/enough?
Should we use gifts or commercial mechanisms to create an adequate supply of blood and replacement body parts?
Trust is important in ensuring high quality and timely supply
The debate about using the market and commercial principles vs the use of altruism raises major economic and ethical issues
What are the demands for blood?
Individuals have 8-10 pints of blood and can restore blood levels after loss of 2-3 pints with saline solution and iron tablets - more than this, transfusion is necessary
NHS needs over 6000 pints daily- top 5 are general surgery, general medicine, cardiothoracic surgery, orthopaedics and blood diseases
Rarer blood groups crucial - O Rh- ~7% of population but universal donor, some groups differ between ethnic groups too
What are some risks of transfusion?
Wrong blood group given to patients
Infections - hepB, hepC, Creutzfeldt-Jakob diseases and HIV
(hepB risk is 1:900000)
What is the supply of blood like?
UK has a voluntary system of giving
2 million donors per year, 200000 new donors are needed every year
Public funding of donation system, storage and distribution - not a free or costless system
Storage and distribution system for blood part privatised by the 2015 Coalition government
Stock levels are usually adequate, but when there is significant local problems (e.g. major accidents), there are calls for more donations from the public
What is the case against a market for blood?
An ethical case against it
- Represses altruism
- Erodes the ‘sense of community’
- Sanctions ‘profits’ in hospitals and clinics and subjects medicine to market place rules
- Increases blood supply from poor, unskilled and unemployed, i.e., redistributes blood from poor to rich, and commercialisation may increase infection risks
What is the case for a market for blood?
Blood is no different from any other tradable product
- Supply can be increases by removing obstacles to donors
- Offering financial rewards, either direct payment or exemption from payment in the future on the basis of blood donated
- Unclear which alternative is cheapest and whether it is likely to ensure quality/safety and an adequate quality
What used body parts is there a market for and where do they come from?
Kidneys - from cadavers and living donor (more emphasis on living) Livers - cadavers and living donors Heart Lung Pancreas Small bowel
Tissue
Cornea
Bone
What is the demand for organs?
6175 people on the UK Transplant Waiting List (Jan 2020)
3117 people have received a transplant since April 2019
Last year over 400 people died while waiting for a transplant
More transplants in 2017/18 than ever before (partly due to increasing use of living donors)
Average time a person spends on the waiting list for a kidney transplant is 2 1/2 to 3 years
What is the balance of supply and demand of organs like?
Demand is a lot higher than supply
What is the supply of organs like?
2018-19 transplant activity data
- 1600 deceased donors
- 1039 living donors (39% of total)
- 2% fall in total number of organ transplants from previous year
- Total number of patients registered for a transplant has fallen slightly (by 5%)
- The number of opt-in registrations on the ODR increased from 24.9 million to 25.3 million at the end of March 2019 (517124 opt-out registrants)
What are some alternatives to transplant? (Kidney)
Mechanical maintenance for kidneys
- hospital and home haemodialysis
- continuous ambulatory peritoneal dialysis (CAPD)
Quality of life after transplant superior to dialysis, i.e., transplants are more clinically effective and cost-effective
Younger spare parts give better outcomes
- improved road safety policy (and death from subarachnoid haemorrhage) has reduced supply of younger donors
Problem is the lack of availability of used body parts to transplant
What is the more cost effective solution to kidney failure?
End stage renal failure patients on renal replacement therapy (dialysis) costs ~£17500 per year for peritoneal dialysis and £35000 for hospital haemodialysis per year
Indicative cost of kidney transplant ~£17000 per patient per transplant
- Immuno-suppression following transplant £5000 per patient per year
Kidney transplantation leads to a cost benefit in the second and subsequent years of £25800 pa
Cost savings of kidney transplantation compared to dialysis over a period of ten years is £241000 or £24100 per year for each year that the patient has a functioning kidney transplant
NB 2010 figures
How could we we increase the supply of organs?
Replace opt in with donor cards with opt out scheme
- Implemented in Wales, planned in England ‘Spring 2020’
Use of transplant co-coordinators and clinical leads in hospitals to increase supply - evidence of effectiveness
Use of ‘nudges’
- DVLA website encouraging people to join the register
Financial incentives: used in the blood market (e.g. USA)
Should we pay for human organs?
Paying donors is illegal almost everywhere
- Worldwide shortage of organs
- Black markets exist - ‘international organ trade’
Should such markets be legalised and regulated?
What is the case for paying for organs?
It would increase the supply
- Iran is the only country where kidney trade is legal
- ‘Rewarded Gifting’ act approved by the Iranian Board of Ministers in 1997
- Two years later, the waiting list for kidney transplants had almost disappeared
Illegal ‘transplant tourism’ occurs and can be risky for donor and recipient e.g. sources such as Pakistan farmers and Chinese criminals
Rottenberg
- ‘each has property rights in his own body’
- ‘since society is willing to pay people to put their lives and health at risk in hazardous occupations, it is difficult to see why it is thought objectionable to risk impairment by sale of tissue’
- Debates about quality control and values but this does not help patients if ‘doctors stand in the way because they find commerce ethically offensive’
How are organs rationed?
Age - prefer young donors and recipients?
Behaviour - e.g exclude users of alcohol and tobacco?
Family circumstances - e.g dependents
Social class - favour the poor?
Health status
Anything else?
- Education level?
- Religion?
- Toss a coin?
- People who have completed donor registration?
Which is fair?
- Scottish study has shown patients are less likely to be on a renal transplant list if they are older, if female, have diabetes, are in a higher deprivation category and are dialysed in a unit with no transplant capacity
What are some examples of studies?
Cross-sectional study Population-based research on aetiology - Case-control studies - Cohort studies Experimental studies - Randomised controlled trials Research synthesis - Systematic reviews / meta-analysis Principles of qualitative research
How do we classify population research?
Descriptive - whats it like?, don’t need control, point in time
- Survey
- Case report
- Case series
Analytic - why is it like this?, need control, across time
- Experimental - Trials
- Observational - Cohort, case-control
What are cross sectional studies?
Descriptive
Cross-sectional studies take place at one point in time
Think of them as a survey, although this could also be a description of a group of cases (eg SARS)
Major challenge is how well the study represents the population
Impossible to judge cause-effect relationships
What is a typical structure of a cross-sectional study?
All take place at one time Begin - Study population -> free of disease/outcome - Measure/Classify and Compare risk/factor + risk/factor - -> have disease/outcome - Measure/Classify and Compare risk/factor + risk/factor -
What are individual or group measurements?
Individual - measure exposure at the individual level
Also possible to consider average measures for a group/area
Such studies are often termed ‘ecological studies’
Be careful, relationships that are apparent at an area-level may not be present for individuals - ecological fallacy
Why use ecological measures?
Can be easier
Some things only exist at a group/area level
- Air quality
- Population density
- Political structure
In exploring questions including such things an ecological design may well be best
In many circumstances ecological measures may be a poor proxy for individual measurement - often averages
What are some key points about analytical experimental design?
The investigator is in control
Interventions are assigned by the investigator
If groups only differ in terms of intervention then changes observed are a consequence of the intervention
What is the typical structure of a randomised controlled trial?
During the PRESENT Begin - Study population - Allocate (Random) ->Experiment/intervention -> Control In the FUTURE - Measure outcome/compare For both experiment/intervention and control group disease outcome + disease outcome -
What are observational studies?
Implies no intervention by investigator
An analysis of spontaneously occurring events
Group assignment (exposure or outcome) are not random
Often used to explore aetiology (cause)
Cohort - start with exposure, compare outcomes
Case-control - start with outcome, compare exposures
What is the typical structure of a cohort study?
During the PRESENT Begin - Study population - have outcome already - excluded from the study - free of disease proceed Measure and classify -> risk/factor + -> risk/factor - In the FUTURE Measure outcome/compare - For both + and - disease/outcome + disease/outcome -
For an historical cohort study the timeline is shifted backwards
- Beginning study population and measure and classify is in the past
- Measure outcome/compare is in the present
What is the typical structure of a case-control study?
In the PAST Classify and compare - risk/factor + - risk/factor - In the PRESENT Begin (start with outcomes) - Cases - people with disease/outcome - Controls - people without disease/outcome
What is the hierarchy of evidence?
FILTERED INFORMATION
Systematic reviews
Critically-appraised topics (evidence syntheses and guidelines)
Critically-appraised individual articles (article synopses)
UNFILTERED INFORMATION
Randomised controlled trials (RCTs)
Cohort studies
Case-controlled studies, case series/reports
Background information/expert opinion
Gold standard at top moving down
What is bias?
‘Systematic error’ in measurement
Distinct from ‘random error’
Examples
- In a survey - what about non-responders
- In a cohort study - anaemia has an association with age, could that explain what we see?
- In a case-control study - perhaps children with leukaemia have moved for treatment
- In a trial - (if well conducted) should be little bias
With hierarchy of evidence - as you go up we worry less about bias
What is risk?
Risk = probability that an event will occur during a specified time
(a quantified uncertainty)
How can risk be quantified?
e.g. Dying on the road over 50 years of driving - 1 in 85
Risk
- 1 in 85 (natural frequency)
- 1/85 = 0.012 (probability)
- 1.2% (percentage)
Odds
Ratio of probability that will to probability that won’t
- 1/85 divided by 84/85
- 1 to 84 or 1/84 or 0.012
What is the equation for risk in a group of people?
Risk of thing = number who get thing / number in group (at risk)
IN A SPECIFIED TIME PERIOD
What are relative measures?
Risk ratios and odds ratios are relative measures
- The risk of cervical cancer amongst OCP users is twice that of non-users
- The risk of cervical cancer amongst OCP users is infinitely higher than in male users
- Be clear about what group is your reference group
What are absolute measures?
Risk and odds themselves and risk differences are absolute measures
- They can be interpreted without reference to any other group
- They are measured directly on the ‘scale’ of risk from 0 to 1
How do you calculate risk difference?
e.g. risk of cervical cancer when taking OCP
Risk difference = risk with OCP - risk without OCP
14-7 in 10000 = 7 in 10000
How do you calculate a risk ratio?
e.g. cervical cancer when taking OCP
risk ratio = risk with OCP divided by risk without OCP
14/7 in 10000 = 2
How do you calculate odds ratio?
e.g. cervical cancer with OCP
odds ratio = odds with OCP divided by odds without OCP
14/7 in 10000 = 2
Why do we have multiple ways to compare and contrast risk?
Risk difference tells us something about ‘impact’
Risk ratio tells us something about ‘strength’ of relationship
There are some circumstances where we can’t calculate a risk ratio - in particular case-control study
In this case we are able to use the odds ratio
What makes people more likely to accept risks?
Risks that are
- Voluntary
- Controllable
- Familiar
- Non-catastrophic
- ‘Fair’ in the way benefit and risk distributed (ie more risk more possible benefit)
What do people dread when it comes to risk?
- Perceived lack of control
- Dread
- Catastrophic potential
- Fatal consequences
- Inequitable distribution of risks and benefits
What is considered unknown when it comes to risk?
- Unobservable
- Unknown
- New
- Delay before harm
How can risk be effectively communicated?
Language - Try and avoid descriptive terms Presentation of quantified risk Develop trust - Risk of vaccine related illness may be low, but do you 'believe' what you're told Decision aids Practice
