HaDSoc Flashcards
0
Q
What is an adverse event?
A
An injury caused by medical management (rather than the underlying disease) and that prolongs hospitalisation, produces a disability or both
1
Q
Why has there been such a huge change in the quality and safety of health services recently?
A
Series of scandals- such as Bristol Enquiry (2001)
Emergence of lots of evidence indicating the patients are not safe or the services are not of a good quality:
- direct costs and legal bills –> inequitable care
- patients being harmed and receiving substandard care –> adverse events - unavoidable or preventable
- variations in h/c around the country –> not everyone is receiving the best care
2
Q
What is an unavoidable adverse event?
A
Adverse event when the medical management had no reason to think the adverse event would occur and so are completely infallible (e.g. A drug reaction)
3
Q
What is a preventable adverse event?
A
An adverse event that could be prevented given the current state of medical knowledge (e.g. Operations [never events], transfusion of blood to the wrong group! wrong dose of medication given, medication administered incorrectly)
4
Q
What is a never event?
A
Events that should not happen under any circumstance
5
Q
Why do medical errors happen?
A
INDIVIDUALS are at fault (incompetent, careless, badly motivated, negligent) Over reliance on individual responsibility - everyone is fallible, most medicine is complex or uncertain, personal effort is necessary but not sufficient to deliver safe care
SYSTEM is at fault (multiple contributions to an incident or failing of care and not the right defences built in) Most errors result from errors in the system - as they are poorly designed and don’t take into account human factors
General culture and behaviour
6
Q
What is meant by human factors?
A
Factors that make a person human, which cannot be changed and which systems ought to try and account for, in order to avoid errors
- everyone is fallible, most of medicine is complex and uncertain, personal effort is necessary but not sufficient to deliver safe care
- many psychological responses to particular kinds of situations are highly predictable but often poorly anticipated
7
Q
How can we remove human factors in order to reduce the incidence of medical error?
A
Avoid reliance on memory Make things visible Review and simplify processes Standardise common processes and procedures Routinely use checklists Decrease the reliance on vigilance
8
Q
What are the three different types of error?
A
- Slips and lapses
- Mistakes
- Violation
9
Q
What is meant by a slip/ lapse?
A
BY ACCIDENT
Error of action
Person knows what they are doing but action does not turn out as intended
10
Q
What is meant by a mistake?
A
DIDN’T KNOW ENOUGH
Error of knowledge of planning
Action goes as planned but fails to achieve intended outcome because the wrong action was taken
11
Q
What is meant by a VIOLATION?
A
INTENTIONAL ERROR
Intentional deviations from protocol, standards, safe operating procedures or other rules
12
Q
What is equity?
A
Everyone with the same need gets the same care
13
Q
What is inequitable care?
A
Patients across England vary in the extent to which they receive high quality care and in access to care
14
Q
Why is equity not always the case?
A
Due to cost and legal bills
15
Q
What is the Swiss cheese model of accident causation?
A
Successive layers of defences, barriers and safeguards in healthcare (layers of cheese) which hazards can penetrate through due to active failures and latent conditions/ failures (holes in the cheese) resulting in losses
16
Q
What are active failures described in the Swiss cheese model of accident causation?
A
Acts that lead to direct harm of the patient, at the sharp end of practice closest to the patient
(E.g. Administering the wrong dose)
17
Q
What are latent conditions/failures described by the Swiss cheese model of accident causation?
A
Predisposing conditions that make active failures more likely to occur
(E.g. Poor training, poor design of syringes, too few staff)
18
Q
What is clinical governance?
A
A framework through which the NHS organisations are accountable for continuously improving the quality and safeguarding high standard of care by creating an environment in which excellence in clinical care will flourish
19
Q
What are the NHS Outcomes framework and the 5 domain?
A
Specific national outcome goals and indicators in 5 domains linked to payments and financial incentives
1. Preventing people from dying prematurely
2. Enhancing quality of life for people with long term conditions
3. Helping people recover from episodes of ill health/ injury
4. Ensuring people have a positive experience of care
5. Treating and caring for people in a safe environment and protecting from avoidable harm
The NHS outcomes framework provides a national overview of how the NHS is performing, holds the health secretary and NHS CB accountable for £95 billion of public money and acts as a catalyst to change NHS culture and behaviour to drive up quality
20
Q
In what 7 ways are quality and safety in NHS monitored and improved?
A
- Standard setting
- Commissioning
- Financial incentives
- Disclosure
- Regulation- registration and inspection
- Clinical audits
- Professional regulation
21
Q
How is standard setting involved in monitoring and improving the NHS?
A
NICE quality standards- set of statements that are:
Markers of high quality, clinical and cost effective patient care across a pathway or clinical area that are:
- derived from the best available evidence such as NICE guidance or other NHS Evidence accredited sources
- produced collaboratively with the NHS and social care, along with their partners and service users
22
Q
How is commissioning involved in monitoring and improving the NHS?
A
There are 211 clinical commissioning groups (CCG’s) in England
- commission services for their local populations
- drive local quality improvement through contracts
- held accountable for their progress in delivering outcomes by commissioning outcomes framework (COF) (use indicators that are shown to have a strong link with outcomes)
- COF indicators measure quality and (via NHS commissioning boards) hold CCG’s to account
23
Q
How are financial incentives involved in monitoring and improving the NHS?
A
Quality and outcomes framework (QOF)
- sets national quality standards with indicators in primary care
- clinical organisational and patient experience
- general practices score points according to how well they perform against indicators
- practice payments are calculated based on points achieved (25% of GP practice income)
- results posted online (can compare GP practices to average for PCT and England)
24
How is disclosure involved in monitoring and improving the NHS?
All trusts are now required to publish quality accounts, increasing the disclosure of information about performance, both at organisational level and individual level
- published annually
- publically available
- focus on safety, effectiveness and patient experience
25
How is regulation (registration and inspection) involved in monitoring and improving the NHS?
Care quality commission (CQC)
All NHS trusts must be registered with the CQC since 2009
CQC considers NICE quality standards, checks quality accounts and can:
- impose registration of 'conditions' if not satisfied
- make unannounced visits
- issue warning notices, fines, prosecution, restrictions on activities, closure
26
What is a clinical audit and How are clinical audits involved in monitoring and improving the NHS?
A quality improvement process hat seeks to improve patient care and outcomes through systematic review of care against criteria and the implementation of change.
Component parts of a clinical audit:
- setting standards
- measuring clinical practice
- comparing results with standards (criteria)
- changing practice
- re auditing to make sure practice has improved
27
How professional regulation involved in monitoring and improving the NHS?
Undergoes extensive reform
Change from doctors being registered unless they were proven to be unfit to having to demonstrate that they are fit in order to remain registered
Change from not depreciating colleagues to duty to report on poorly performing colleagues
28
Why are social research methods important?
Social research is important so that we can be confident in answering questions about social life.
Policies and practices are based in social science research, and doctors need to be able to integrate and critically evaluate multiple resources
29
What are the two man types of social research methods?
Quantitative and qualitative
30
What does the choice of a social research study design depend on?
1. Topic under investigation and the research question
2. Research teams preferences/ expertise
3. Time and money available
4. Funders and/or audience
* different methods can be used in the same study (especially if complementary)
31
What is quantitative research?
Collection of numerical data which begins as a hypothesis, where conclusions can be drawn by deduction
Point of view of the researcher and the researcher may be distant
32
What are three types of quantitative research?
Experimental study designs- RCT's, cohort, case control, cross sectional
Secondary analysis of data from other sources- official statistics (census), national surveys (conducted by charities and universities), local and regional surveys (conducted by NHS organisations, universities etc.)
Questionnaires- valid and reliable, published and unpublished
33
What are some advantages of quantitative research?
Reliable and repeatable
Good at describing, measuring, finding relationships between things, and allowing comparisons
Can use clear questions in questionnaires which are much less likely to yield inaccurate responses
34
What are some disadvantages of quantitative research?
May force people into inappropriate categories
May not allow people to express things in the way that they want
May not access all the important information
May not be effective in establishing causality
When ambiguous questions are asked in questionnaires - may result in people interpreting the question differently and giving the unwanted answer
35
What is qualitative research?
Collection of information using words and artefacts
| Point of view of participants with the researcher close
36
What are four types of qualitative research?
Ethnography (studying behaviour in natural context- OVERT) and observation (just watching behaviour and not necessarily studying everything- COVERT)
Interviews- semi structured, prompt guide, clear agenda of topics, conversational in style, emphasis on participants giving their perspective
Focus groups- quick way of establishing parameters accessing group-based collective understanding of an issue
Documentary and media analysis - independent evidence (medical records and patient diaries)
37
What are some advantages of ethnography and observation?
Valuable insight into what actually happens
Gains access to behaviour of which individuals themselves may provide biased accounts of or be unaware of
Allows researchers to record mundane unremarkable (to participant) features of every day life which an individual may not feel worthy of commenting on
38
What is a disadvantage of ethnography and observation?
Labour intensive
| Usually has to be combined with more qualitative studies such as more formal interviews to yield good evidence
39
What is an interview?
Detailed, focussed accounts relating to an issue of interst but gives someone's professed views of explanation of the issue not an unproblematic description of the issue itself
40
What are some advantages of focus groups?
Flexible and quick way of establishing parameters
| May encourage people to participate
41
What are some disadvantages of focus groups?
Not useful for individual experience
Some topics may be too sensitive
Difficult to arrange, need a fairly homogenous group and a good facilitator to manage group dynamics
42
What are some advantages of documentary and media analysis?
May provide historical context
| Can analyse television, newspaper and media stories
43
What is a disadvantage of documentary and media analysis?
At risk of artful reconstructions - not entirely true accounts
44
How can qualitative data be analysed?
Ongoing iterative process - labour intensive
Often an inductive approach
- close inspection of data (interview / focus group transcripts)
- try to identify themes
- produce specification of themes
- assign data to themes
- constantly compare data analysis against the themes
45
How is qualitative research appraised?
Like quantitative research, qualitative research should be carried out robustinf
Some debate over most appropriate criteria for assessing quality of qualitative research
CASP offers one tool - rigour, credibility, relevance
Transparency around sampling, methods and analysis
Good qualitative research will leave an audit trail
46
What are some advantages of qualitative research?
Allows us to understand perspective of individuals
Accesses information not revealed by quantitative approaches
Explaining relationships between variables (why and how)
47
What are some disadvantages of qualitative research?
Not good at finding consistent relationships between variables
Generalisability (can't infer views on a small sample on population as a whole)
48
What is evidence based practice?
Evidence based practice (/medicine/healthcare) involves the integration of individual clinical expertise with the best available external clinical evidence from systematic research
Argues that healthcare should be based upon the best available evidence (I.e. The findings of rigorously conducted research)
Evidence of: effectiveness (drugs, practices and interventions) and cost-effectiveness (finite resources, where should money be spent?)
Archie Cochrane called for a register of all RCT's and criticised the medical profession for failing to take account of research
49
What is the role of systematic research in evidence based practice?
Systematic research has become very important in informing evidence base
- traditional literature reviews may be biased and subjective
- can address clinical uncertainty and highlight gaps or poor quality in research - critical appraisal tool to assess the quality of evidence
- offers authoritative, generalisable and up to date conclusions
- save clinicians from having to locate and appraise the studies for themselves
- may reduce delay between the research discoveries and implementation
50
Where do you get the evidence from for systematic research?
Medical journals
Cochrane collaboration
NHS centre for reviews and dissemination
NIHR Heath technology assessment programme
51
What are some practical criticisms of evidenced based practice?
Around the POSSIBILITY of evidence based practice
- may be impossible to create and maintain systematic reviews across all specialities
- challenging and expensive to distribute and implement findings
- RCT's seen as gold standard but not always feasible or desirable (ethics)
- choice of outcomes very biomedical, limiting which interventions are trialled and therefore funded (e.g. NICE guidance)
- requires good faith from pharmaceutical companies
52
What are some philosophical criticisms of evidence based practice?
Population level outcomes may not apply to an individual
Evidence based medicine may make professionals 'unreflective rule followers'
Professional responsibility/ autonomy
Might be seen as a means of legitimising rationing, with potential to undermine trust in the doctor- patient relationship and ultimately the NHS
53
What are some difficulties of getting evidence into practice?
Resources may not be available to implement change- financial or human
Evidence exists but doctors don't know about it- distribution of the evidence ineffective? Doctors incentivised to keep up-to-date
Doctors know about evidence but don't use it- habit, organisational culture, professional judgement
Organisational systems cannot support innovation- e.g. Managers lack the authority to invoke changes
Commissioning decisions reflect different priorities - what if patients say they want something else?
54
What three main inequalities are evident in healthcare?
Socioeconomic status
Ethnicity
Gender
55
What is a social class?
A segment of the population distinguished from others by similarities in labour market position and property relations
56
In what 4 ways can socioeconomic status be measured and classified?
Individual and their occupation- Registrar General Scheme (based on 6 social classes- professional/ business, intermediate/ lesser professions/ trade, skilled non manual, skilled manual, semi skilled manual, unskilled manual), National Statistics Socio-Economic Classification (NS-SEC) (8 classes of occupation from higher senior managerial and professional occupations to never having worked or being unemployed)
Area based - Townsend Deprivation score
Education- Years/ Levels reached
Income- e.g. in a household
57
What is the Townsend deprivation score?
```
Index of multiple deprivations
On 7 domains
- income
- employment
- health and disability
- educational skills and training
- barriers to housing and services
- living environment
- crime
```
Sometimes looks at just four variables: unemployment, car ownership, overcrowded housing, housing tenure
58
What are some limitations of the Townsend deprivation score?
Heterogeneity and transient populations
59
How is socioeconomic status linked to health?
The less deprived a population the higher their life expectancy and disability free life expectancy age standardised mortality rates are also higher in lower Socio-economic groups
In the UK- health inequalities are evident between and within regions; deprivation is strongly associated with ill health: the more deprived a person is the larger the proportion of their life that will be spent in ill health and the more likely they will die at a younger age
60
What is ethnicity?
The identification with a social group - membership of a collectivity - on the basis of shared values, beliefs, customs, traditions, language and lifestyles
61
How is ethnicity linked to health?
Some conditions are much more prevalent in certain ethnicities due to them having high risk factors as a result of their values, beliefs, customs, traditions and lifestyle
E.g. Cardiovascular disease has its highest % prevalence in men of south Asian origin
E.g. Cancer has its lowest prevalence in black minority ethnic (BME) groups
E.g. Infant mortality- higher rates in women of Pakistani and black Caribbean origin
62
How is gender linked to health?
Social (gender- roles, norms, discrimination) and biological (sex- hormonal, reproductive differences) variances between genders both affect health
Gender roles and relationships are socially constructed
Men die quicker but women get sicker
63
How does socioeconomic status affect individuals access to health care?
Heath tends to be manages as a series of crises
Normalisation of ill health
Event based consulting may be required to legitimise consultations
Difficulty marshalling resources needed for negotiation and engagement with health services
Tendency to use more 'porous' services
Doctors judgements of technical and social eligibility affects referrals and offers
64
How does ethnicity affect individuals access to health care?
Higher use of primary care (some groups)
Higher use of mental health consultations (South African Female elders)
Lower receipt of specialist services
Variations between and within ethnic groups; be careful to avoid simplistic classifications
Languages and social networks may deter help seeking
Stigmatisation and stereotyping
Association between ethnicity and socioeconomic status
65
How does gender affect individuals access to health care?
Women have a higher use of primary care - cultural expectations of what is gender appropriate
66
Why do inequalities in health occur? [Black Report (4) + 2]
The Black Report, department of health (1980)gives 4 reasons for health inequalities (HI) :
1. Artefact explanation- HI evident due to the way statistics are collected - concern about quality of data and method of measurement
2. Social selection explanation- direction of causation is from health to social postion- sick individuals move down social hierarchy and healthy individuals move up- chronically I'll and disabled people are most likely to be disadvantaged
3. Behavioural cultural explanation- ill health is due to people's choices/ decisions, knowledge and goals- people from disadvantaged backgrounds tend to engage in health damaging behaviours, whereas people from advantage backgrounds tend to engage in health promoting behaviours
4. Materialist explanation- inequalities in healthcare arise from differential access to material resources (low income, unemployment, work environments, low control over job, poor housing conditions); lack of choice in exposure to hazards and adverse conditions, accumulation of factors across life course; MOST PLAUSIBLE
5. Psychosocial perspectives - effect of a stressor on health; psychosocial pathways associated with relative disadvantage act in addition to direct effects of absolute material living standards (Bio Psycho Social model)
6. Income distribution- relative (not average) income affects health; countries with greater income inequalities have greater health inequalities; not the richest but societies with the most economic equality have the best health; theory that social cohesion is important in health
67
What are some limitations of the artefact explanation of inequalities in health?
Most discredited as an explanation as if anything data problems lead to under, not over estimation of inequalities
68
What are some limitations of the social selectio explanation of inequalities in health?
Plausible explanation but only minor contribution
69
What are some limitations of the behavioural- cultural explanation of inequalities in health?
Behaviours are outcomes of social processes not simply individual choice
Choice may be difficult to exercise in adverse conditions
Choice may be rational for those whose lives are constrained by their lack of resources
70
What are some limitations of the materialistic explanation of inequalities in health?
Further research needed as to precise routes through which material deprivation causes ill health
71
What are lay beliefs?
Constructed by people to understand and make sense of areas in their lives about which they have no specialised knowledge
Socially embedded – draw on cultural, social and personal knowledge and experience and own biography
Medical information may be rejected if it is incompatible with competing ideas for which people consider there is good evidence
72
What can lay beliefs impact?
Health behaviour
Illness behaviour
Compliance/ non-compliance (adherence) with treatment
73
What are deniers?
People who believe they don't suffer from a condition when they do
74
What are distancers?
People who don't believe they have the actual form of a condition, and thus convince themselves that they have a lesser form of the condition
75
What are pragmatists?
People who know they have a condition but only use preventative medication when condition becomes severe
76
What are acceptors?
People who accept and acknowledge their condition completely and this follow all of the doctors advice
77
Why may lay beliefs have formed?
To understand why and how illness happens – combination of person, familial and social sources of knowledge; people know fat, unfit, smokers are at risk of heart attack
Why it happened to a particular person at a particular time
Not infallible- everyone knows an overweight smoker who always drinks and lives a long and healthy life
When lay epidemiology does not fit 'randomness and fate' - the last person you would expect
78
What are three perceptions of health?
Negative definition
Functional definition
Positive definition
79
What is the negative definition perception of health?
Health is the absence of illness
| More commonly held belief in lower socioeconomic groups
80
What is the functional definition perception of health?
Health is the ability to do certain things
| Generally older populations
81
What is the positive definition perception of health?
Health is a state of well being and fitness
| More commonly held belief in higher socioeconomic groups
82
What is meant by health behaviour?
Activity undertaking the purpose of maintaining health and preventing illness
(E.g. Quitting smoking)
83
What is meant by illness behaviour?
Activity of ill person to define illness and week solution
- 35% of all symptoms result in 'lay care'; the use of over the counter medicines
- most symptoms never get to a doctor- Illness/ Symptom Iceberg
Influenced by culture, visibility/ salience of symptoms, frequency and persistence of symptoms, tolerance threshold, availability of resources, lay referral
84
What is meant by sick role behaviour?
Formal response to symptoms and action of person as a patient including seeking professional help
85
What is the lay referral system?
Up to 75% of those visiting a doctor have discussed their symptoms with another person beforehand
The lay referral system is a chain of advice seeking contacts which the sick make with other lay people prior to (or instead of) seeking help from health care professionals
86
Why is the lay referral system important?
Helps us to understand:
- why people may have delayed seeking help
- how, why and when people consult doctors
- role of a doctor in their health
- use of health services and medicine
- use of alternative medicine
87
What are the main determinants of health and disease from a global perspective?
```
Determinants of health are a range of factors that have a powering and cumulative effect on the health of the population, because they shape behaviours and environmental risk factors. The main global social causes of ill health include:
o Poverty
o Social Exclusion
o Poor Housing
o Poor health systems
```
88
What is primary prevention of disease?
o Aims to prevent the onset of disease or injury
o Reduce exposure to risk factors
• Immunisation
• Quitting smoking
89
What is secondary prevention of disease?
o Aims to detect and treat a disease (or its risk factors) at an early stage
o Prevent progression
• Monitoring blood pressure
• Screening for cervical cancer
90
What is tertiary prevention of disease?
```
Tertiary Prevention
o Aims to minimise effects of established disease
• Steroids for asthma
• β-Blockers for high blood pressure
• Renal transplants for renal failure
```
91
What are the main principles of health promotion?
```
Empowering
Participating
Holistic
Intersectional
Equitable
Sustainable
Multi strategy
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92
What are some health promotion strategies?
o Medical or Preventive- physical medical intervention
o Behaviour Change- persuasive campaigns
o Educational- providing info, prevention, tips
o Empowerment- client centred, patient centred approach
o Social Change- we've seen it happen in pubs/ public places with the smoking ban
93
What are the 6 main dilemmas raised by health promotion?
```
Ethics of interfering in people's lives
Victim blaming
Mistaken belief that giving people information gives them power
Reinforcing of negative stereotypes
Unequal distribution of responsibility
Prevention paradox
```
94
How does the 'Ethics of interfering in people's lives' result in a dilemma of health promotion?
People have the right to make their own choices
95
How does 'Victim Blaming' result in a dilemma of health promotion?
* Focusing on individual behavioural change plays down the wider social determinants of health
* E.g. high perceived costs of eating a healthier diet
96
How does the 'mistaken belief that giving people information gives them the power' result in a dilemma of health promotion?
* ‘Fallacy of empowerment’
* Unhealthy lifestyles are not due to ignorance but due to adverse circumstances and wider socioeconomic determinants of health
97
How does 'reinforcing of negative stereotypes' result in a dilemma of health promotion?
• E.g. leaflets aimed at HIV prevention in drug users can reinforce that drug users only have themselves to blame for their situation
98
How does the 'unequal distribution of responsibility' result in a dilemma of health promotion?
* Implementing health behaviours is often left up to women
| * E.g. task to get family to eat more fresh fruit/less processed
99
How does the 'prevention paradox' result in a dilemma of health promotion?
* Interventions that make a difference at population level may not have much effect on the individual
* E.g. Reduction in smoking will decrease lung cancer rates ~10 years later, but the individual who gives up smoking might still die of cancer and some non-smokers get lung cancer
100
How is health promotion affected by lay beliefs?
If people don’t see themselves as a ‘candidate’ for a disease they may not take on board the relevant health promotion messages.
101
What is evaluation?
Rigorous and systematic collection of data to assess the effectiveness of a programme in achieving predetermined objectives
102
Why must we evaluate healthcare?
Need for evidence based interventions- properly conducted evaluation studies can provide necessary evidence
Accountability- evidence also gives legitimacy to interventions and political support
Ethical obligation- ensures no direct or indirect harm
Programme management and development
103
What are some different types of health promotion evaluation?
Process
- focusses on assessing process of programme implementation
- employs many qualitative methods
Impact
- assesses immediate effects of intervention
- more popular choice: easiest to do
Outcome
- measures more long term consequences
- timing of evaluation can influence outcome - delay (some interventions might take a long time to have an effect) decay (some interventions wear off rapidly)
104
What are some difficulties with evaluation?
1. Design of intervention
2. Possible lag time to effect
3. Many potential intervening or concurrent confounding factors
4. High cost of evaluation research - studies likely to be large scale and long term
105
What is meant by a chronic illness and how does it affect the lives of individuals?
Chronic illness is a term that encompasses a wide range of conditions, which are long term and tend to have profound influence on the lives of sufferers. Manifestations vary greatly day-to-day, and medical intervention is usually palliative. Chronic illness will increase with ageing population, but it is not only older people who live with chronic disease.
106
Why is it important to understand and study chronic illnesses ?
A detailed understanding of the impact of chronic illness and disability on daily life is necessary for the providers of medical and social services to offer appropriate care and support.
107
Why may the onset of a chronic illness be difficult for patients?
Symptoms can be striking
Symptoms may be slow in their onset
Other explanations for their symptoms may be available and worrying
108
How can the process of diagnosis of a chronic illness affect a patient?
o May be a prolonged period of uncertainty
o Ambivalent status of some diagnoses
• E.g. Chronic fatigue syndrome, irritable bowel syndrome
o The process of diagnosis can be quite unpleasant
o Diagnosis can be
• Shocking
• Threatening
• A relief
109
Why is a sociological approach to chronic illnesses distinct to other
approaches?
Focusses on how chronic illnesses impact on social interaction and role performance
Modern theory derived from studies in the interactionist tradition
Concerned with experiences and the meanings of chronic illnesses
Interested in how people manage and negotiate chronic illness in their everyday life
110
What is biological disruption regarding chronic illnesses?
Biographical disruption is a key sociological concept, identifying chronic illness as a major disruptive experience.
111
What is meant by illness narratives regarding chronic illnesses?
Refers to the story telling and accounting practices that occur in the face of illness.
Much sociological research on chronic illness is based on people’s narratives of their illness. These narratives offer a way of making sense of the illness, and they perform certain functions.
112
What is meant by the work of chronic illnesses?
Time and effort required to cope and live with a chronic illness.
Includes illness work, everyday life work, emotional work, biographical work and identity work.
113
What is illness work wrt chronic illnesses?
o Symptom management
o Central to the coping task is dealing with the physical manifestations of illness. E.g. eating, bathing, going to the toilet
114
What is everyday lied work wrt chronic illnesses?
o Managing daily living
o A strategy is devised to manage the condition and its impact
• Mobilisation of resources, balancing the demand on others and remaining independent.
o Try to keep pre-illness lifestyle and identity intact
• Disguising or minimising symptoms
o Re-designate new life as ‘normal life’
115
What is emotional work wrt chronic illnesses?
o Managing one’s own emotions and those of others
o Work that patients do to protect the emotional well-being of others
• Downplaying pain or other symptoms
o Impact on social relationships
• People may find friendship with patient disrupted and withdraw
o Impact on role (e.g. breadwinner, mother etc.) may be devastating, especially if it involves a switch to dependency
116
What is biographical work wrt chronic illnesses?
o Loss and subsequent reconstruction of self
• Former self image crumbles away without simultaneous development of equally valued new ones- constant struggle to lead valued lives and maintain positive definitions of self
• interaction between body and identity
117
What is identity work wrt chronic illnesses?
o Work to maintain an acceptable identity
o Illness can affect how people see themselves, and how others see them
• Illness can become the defining aspect of identity
o Loss of self gives rise to 4 dilemmas:
• discreditable stigma
• discredited stigma
• enacted stigma
• felt stigma
118
What does stigma mean?
A negatively defined condition, attribute, trait or behaviour conferring “deviant” status; a “spoiled” identity.
119
What is a discreditable stigma?
o Nothing seen, but if found out…
o The stigma is yet to be revealed. It may be kept secret, revealed intentionally by the patient or by some factor the patient cannot control.
• E.g. Mental illness, HIV
120
What is discredited stigma?
o Physically visible characteristic or well-known stigma that sets patient apart
o The patient is discredited, thus affects not only the patient’s behaviour but the behaviour of others
• E.g. Physical disability, known suicide attempt
121
Give an example of a condition which can be associated with both discreditable and discredited stigmas
Some conditions can be associated with both discreditable and discredited stigma
• E.g. Epilepsy
122
What is an enacted stigma?
o The real experience of prejudice, discrimination and disadvantage
o Discrimination has actually occurred
123
What is a felt stigma?
o Fear of enacted stigma
o Encompasses a feeling of shame
o Discrimination has not actually occurred, felt stigma is the fear of it
124
What is the medical model of disability?
o Disability = Change from medical norms
o Disadvantages are a direct consequent of impairment and disabilities
o Medical intervention needed to cure or help
The medical model lacks recognition of psychological and social factors, focussing purely on the biological. It also uses stereotyping and stigmatising language.
125
What is the social model of disability?
o Disability = A form of social oppression
o Disadvantages are a product of environment and its failure to adjust
o Political action and social change needed to help
The social model leaves out biological factors, with an overly drawn view of society. It also fails to recognise bodily realities and the extent to which these are solvable socially.
126
What is the ICIDH?
International Classification of Impairments, Disabilities or Handicaps (ICIDH)
ICIDH attempts to classify the consequences of disease.
o Impairment
• Concerned with abnormalities in the structure of the functioning body
o Disability
• Concerned with the performance of activities
o Handicap
• Concerned with broader social and psychological consequences of living with impairment and disability
ICIDH has been widely used but has been subject to criticism. The term ‘handicap’ has been used negatively and is now generally avoided. The model also implies problems are intrinsic or inevitable.
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What is the ICF?
International Classification of Functions, Disability and Health (ICF)
ICF is the WHO’s framework for measuring health and disability at both individual and population levels. It is endorsed for use as the international standard to describe and measure health and disability and attempts to integrate medical and social models.
o Body structures and functions
• Impairments of/to
o Activities undertaken by the individual
• Difficulties or limitations experienced in doing them
o Participation or involvement in life situations
• May become restricted
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Why is it important to measure health?
o Indication of the need for healthcare
o Target resources where they are most needed
o Assess the effectiveness of health interventions
o Evaluate the quality of health services
o To use evaluations of effectiveness to get better value for money
o To monitor patients’ progress
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How is health measured?
Mortality
Morbidity
Patient-based outcomes
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What are patient based outcomes?
There has been an increase in conditions where the aim of treatment is management rather than curing. There is a need to focus on patient’s concerns (patient-centred care). Attention also needs to be paid to the iatrogenic effects of care.
o Attempt to assess well-being from the patient’s perspective
o Compare scores before and after treatment or over longer-periods
• Health-Related Quality of Life (HRQoL)
• Patient-Reported Outcome Measures (PROM)- The NHS outcomes framework identifies PROMs as a key source of information about the outcomes of planned procedures.
Patient based outcomes can:
o Be used clinically
o Be used to assess benefits in relation to cost
o Be used in a clinical audit
o Be used to measure health status of populations
o Be used to compare interventions in a clinical trial
o Be used as a measure of service quality
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What are HRQoLs?
Health-Related Quality of Life (HRQoL) – Quality of life in clinical medicine represents the functional effect of an illness and its consequent therapy upon a patient, as perceived by the patient.
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What are PROMs?
Patient-Reported Outcome Measures (PROM)- The NHS outcomes framework identifies PROMs as a key source of information about the outcomes of planned procedures.
Measures of health that come directly from patients
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What are the 3 main aspects of HRQoL's?
o Emphasis on patient’s own views
o Emphasis on functional effects
o Emphasis on therapy as well as illness
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In what way are HRQoL's multi functional?
Looks at physical functions, symptoms, global judgements of health, psychological well being, social well being, cognitive functioning, personal constructs and satisfaction with care
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Describe the qualitative methods that can be used to measure HRQoLs
o Good for initial looks at HRQoL
• Informing the development of quantitative instruments
o Very resource hungry (Training, time)
o Not easy to use in evaluation, especially RCTs
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Describe the quantitative methods that can be used to measure HRQoLs
o Relies on the use of questionnaires known as ‘instruments’ or ‘scales’
Reliability of Instruments
o Instrument should be accurate over time
• If the patient has no change in health, they should get the same score each time on the measure
Validity of Instruments
o Does the instrument actually measure what it is intended to measure?
• Might only be assessing pain and neglecting social aspects
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Describe Short-Form 36-item Questionnaire (SF-36) as a generic instrument for measuring HRQoLs
o Contains 36 items that assess HRQoL
• Grouped into 8 dimensions
o Responses to questions are scored
o Scores within each dimension are added together to give a score (0-100)
o Dimension scores are not added together to give an overall score, could make interpretation difficult in some cares
The SF-36 is acceptable to people, only takes 5-10 minutes to complete, has good reliability and is responsive to change.
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Describe EuroQol EQ-5D as a generic instrument for measuring HRQoLs
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o Five dimensions
• Mobility, self-care, usual activities, pain/discomfort, anxiety/depression
o Three levels for each dimension
• No problems
• Some/moderate problems
• Extreme problems
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The EQ-5D was original designed to complement other measures, such as SF-36, but is increasingly used as a stand-alone measure. It is widely used, good population data is available, and it has been well validated and tested for reliability. It is particularly suitable for use in economic evaluations.
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What are two generic instruments used to measure HRQoLs?
Short-Form 36-item Questionnaire (SF-36)
| EuroQol EQ-5D
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What are some specific instruments used to measure HRQoLs?
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o Disease Specific
• Asthma Quality of Life Questionnaire
• Arthritis Impact Measurement Scale (AIMS)
o Site Specific
• Oxford Hip Score
• Shoulder Disability Questionnaire
o Dimension Specific
• Beck Depression Inventory
• McGill Pain Questionnaire
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What are some advantages of using specific instruments to measure HRQoLs?
Advantages of Specific Instruments are they have very relevant content, are sensitive to change and are acceptable to patients.
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What are some disadvantages of using specific instruments to measure HRQoLs?
Disadvantages of Specific Instruments are they cannot be used with people who don’t have the disease, comparison is limited and they may not detect unexpected effects.
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What are some problems with the medical model of disability?
Lacks recognition of psychological and social factors, focussing purely on the biological
Uses stereotyping and stigmatising language
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What are some problems with the social model of disability?
The social model leaves out biological factors, with an overly drawn view of society
Fails to recognise bodily realities and the extent to which these are solvable socially
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How is mortality measured?
Easily defined
Not always recorded accurately
Not a very good way of assessing outcomes and quality of care
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How is morbidity measured?
Routinely collected e.g. Disease registers, hospital episodes stats
Collection not always reliable/ accurate
Tells us nothing about patient experiences
Not always easy to use in evaluation
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Why are PROMs used?
Improve clinical management of patients- informed, shared decision making
Comparison of providers (hospitals)- increase productivity through demand management; improve quality through patient choice
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What are the challenges of using PROMs?
Minimising time and cost of analysis and presentation of data
Achieving high rates of patient participation
Providing inappropriate output to different audiences
Avoiding misuse of PROMs
Expanding to other areas: long term conditions, emergency conditions, long term health
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What is screening?
Screening is a systematic attempt to detect an unrecognised condition by the application of tests, examinations, or other procedures, which can be applied rapidly (and cheaply) to distinguish between apparently well persons who probably have a disease (or its precursor) and those who probably do not.
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In what 3 ways can disease be detected?
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1. Spontaneous presentation
o “I’ve found a lump”
2. Opportunistic case finding
o Find pathology whilst looking for something else
3. Screening
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What 4 criteria need to one satisfied for screening to occur?
Disease/ condition
Test
Treatment
Programme
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How can the disease/ condition satisfy the criteria for screening to occur?
o Must be an important health problem
o Epidemiology and natural history must be well understood
o Must have an early detectable stage
o Cost-effective primary prevention interventions must have been considered and where possible implemented
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How can the test satisfy the criteria for screening to occur?
o Simple and Safe
• Health people are being screened
o Precise and valid
o Acceptable to the population
o Distribution of test values in the population must be known
o Proportion who test positive and negative
o An agreed cut-off level must be defined
o Who is counted as being test positive?
o There must be an agree policy on whom to investigate further
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How can the treatment satisfy the criteria for screening to occur?
o Effective evidence based treatment must be available
o Early treatment must be advantageous, must not just bring forward the date of diagnosis
o Agreed policy on whom to treat
o Clinical management of the condition and patient outcomes should be optimised in healthcare providers before participation in screening programmes
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How can the programme satisfy the criteria for screening to occur?
Other options considered, e.g. improving treatment
o Benefit should outweigh physical and psychological harm
o Facilities for diagnosis and treatment and counselling
o Proven effectiveness (preferably with RCT data)
o Quality reassurance for the whole programme- not just the test
o Think about opportunity costs
o Decisions about parameters should be scientifically justifiable to the public
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What two errors will any screening programme make?
False positives
| False negatives
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What are false positives?
False Positives
o Screening programme refers well people for further investigation
o Offered (invasive) diagnostic testing for a condition they do not actually have. Turned into “patients” when they are not actually.
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What are false negatives?
False Negatives
o Failure to refer people who do actually have early disease
o False reassurance for patients
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What are 4 measurements of screening test validity?
Sensitivity (detection rate)
Specificity
Positive predictive value (PPV)
Negative predictive value (NPV)
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What is sensitivity (detection rate)?
o The proportion of the people with the disease who are test positive
o The probability a case will test positive
o “If I have the disease, will I test positive?”
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What is specificity?
o The proportion of the people without the disease who are test negative
o The probability a non-case will test negative
o “If I don’t have the disease, will I test negative?”
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What is PPV?
o The probability that someone who has tested positive actually has the disease
o PPV is strongly influenced by the prevalence of the disease – a high prevalence condition will have a higher PPV than a low prevalence condition
• Only screen in high prevalence populations
o “If I test positive, does it mean I definitely have the disease?”
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What is NPV?
o Proportion of the people who are test negative who actually do not have the disease
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Can sensitivity and specificity be the same?
Sensitivity and Specificity of a test can be the same, even if they have different PPVs.
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What are some advantages of screening?
Early detection of disease may improve outcome
| True negatives reassure patients
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What are some disadvantages of screening?
False positives expose patients to invasive diagnostic tests
False negatives falsely reassure patients
False negatives not offered diagnostic testing they may benefit from
Expensive interventions that divert money away from treatments
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How can lead time bias affect the evaluation of the effectiveness of screening?
o Screened patients appear to survive longer, but only because they were diagnosed earlier
o Patients live the same length of time, but longer knowing they have the disease
o May impact upon patient’s quality of life
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How can length time bias affect the evaluation of the effectiveness of screening?
o Screening programmes are better at picking up slow-growing, unthreatening cases than aggressive, fast-growing ones
o Diseases that are detectable through screening are more likely to have favourable prognosis, and may indeed never have caused a problem
• Curing people that don’t need curing?
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How can selection bias affect the evaluation of the effectiveness of screening?
o Those who have regular screening are also likely to engage in other health behaviours that protect them from disease
o Similar to ‘healthy worker’ bias
o A RCT would help deal with this bias
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In what three ways may a screening programme be really bad?
Alteration of usual doctor-patient contract
o Normally Sick Patient --> Doctor
o Screening Doctor --> Healthy (?) Person
Complexity of screening programmes
o E.g. Cervical cancer, which women do you screen, how many abnormalities that are detected would regress spontaneously, incorporation of HPV testing
Limitations of screening
o Screening carries potential for harm as well as benefit
• For every life saved due to breast screening, about three women are investigated and treated unnecessarily
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What are some structural critiques of screening programmes?
o Victim blaming
• Individuals encouraged to take responsibility for their own health
• Are all equally able to do this?
o Individualising pathology
• What about addressing underlying material causes of disease?
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What are some surveillance critiques of screening programmes?
o Individuals and populations increasingly subject to surveillance
o Prevention part of wider apparatus of social control?
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What are some socialist constructionist critiques of screening programmes?
o Health and illness practices can be seen as moral – given meaning through particular social relationships
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What is the feminist critique of screening programmes?
o Is screening targeted more at women than men?
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What conditions are there not screening programmes available for?
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Prostate cancer (PSA test)
Breast cancer screening with mammography for women <25 y/o
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Because the national screening committee concluded that in these cases screening would do more harm than good
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Describe the history of the NHS
o Created in 1948 as part of the welfare state
• Universal (covering everyone)
• Comprehensive (covering all health needs)
• Free at point of delivery
o Secretary of State for Health has a duty to provide health services
o NHS initially run centrally by Department of Health
o Increasing role for managers through time
o Health and Social Care Act 2012
• Devolves power (especially commissioning) to GPs and others in primary care
• Shakes up NHS structure significantly
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What is the current structure of the NHS?
o Secretary of State for Health
• Overall accountability for the NHS
o Department of Health
• Sets national standards
• Shapes direction of NHS and social care services
• Sets ‘national tariff’ (fee for services charged by service providers, e.g. hospital trusts, to commissioners i.e. Clinical Commissioning Groups)
o National Commissioning Board
• Authorises CCGs
• Supports, develops and performance-manages commissioning
o Clinical Commissioning Groups
• Crucial bodies in the current organisation of the NHS
• Bring together GPs, nurses, specialists, public health, patients, the public and others to commission secondary and community healthcare services
• Must account for national guidance (Commissioning board, NICE etc) in these decisions
o Primary, Secondary and Community services
o Patients
Money flows from the Commissioning Board and Clinical Commissioning Groups to care providers through the commissioning process.
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What is the responsibility of a medical director?
o One doctor in the trust who has overall responsibility for medical quality
o Sits on the trust’s board of directors – a key link between senior management and medical staff
o Communicates between the board and medical staff
o Leadership of medical staff
o Works in partnership with human resource / personnel functions
o Approves job descriptions, interview panels, equal opportunities
o Leads on organisation’s clinical policy and clinical standards
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What is the responsibility of a clinical director?
o Overall responsibility for directorate
o Provide continuing medical education and other training
o Design and implement directories policies on junior doctors’ hours of work, supervision, tasks and responsibilities
o Implement clinical audit
o Induction of new doctors
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What is the responsibility of a consultant?
Responsibility for team
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What is the responsibility of a GP?
Practice principal or partner
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What are some reasons for the increasing healthcare expenditure worldwide?
Demography- The population is ageing and an 85 year old patient costs the NHS 15 times as much as a 5-14 year old.
Technology- New therapies (e.g. cancer) are often very expensive and generally expand the pool of candidates (e.g. broader indications, fewer side effects). They also often don’t cure but offer increased survival.
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Why is it important to set priorities?
Clear about aims
Focus on alleviating impact of chronic conditions
Due to scarce resources - demand > supply
Clear and explicit who benefits from public expenditure - ethical reasons
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What are the 5 D's of rationing in the NHS?
Rationing in the NHS – The 5 D’s
o Deterrent
• Demands for healthcare are obstructed (e.g. prescriptions)
o Delay
• Waiting lists
o Deflection
• GP’s deflect demand from secondary care (gatekeepers)
o Dilution
• Fewer tests, cheaper drugs
o Denial
• Range of services denied to patients (e.g. reversal of sterilisation)
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What are some methods of resource allocation in healthcare?
Explicit rationing- NICE, Tariffs
| Implicit rationing
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What is explicit rationing?
Explicit health care rationing or priority-setting is the use of institutional procedures for the systematic allocation of resources within health care systems
o Based on defined rules of entitlement
o Care is limited and the decisions are explicit, as there is reasoning behind them
• Decisions made by Clinical Commissioning Groups
o Technical Process
• Assessments of efficiency and equity
o Political Process
• Lay participation
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What are tariffs?
o Payment by Results
o Introduced in 2003, tariffs are set nationally
o Healthcare Resource Groups (HRG) reflect an (imperfectly measured) average cost for an individual patient spell
o When a hospital treats a patients, diagnosis and treatment are recorded
• Information decides which HRG the patient is assigned to and therefore which tariff is paid
• E.g. caesarean birth has a higher tariff than normal birth
o Efficient trusts can make a profit, but inefficient trusts can lose money
• Incentive to become more efficient over time
• If avoidable complications occur, trusts may lose money
• ‘Never-Event’ – no payment for in-hospital maternal death from haemorrhage after elective caesarean section
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What is NICE?
Set up to ‘enable evidence of clinical and cost effectiveness to be integrated to inform a national judgement on the value of a treatment(s) relative to alternative uses of resources’.
o NICE provides guidance on whether treatments (new or existing) can be recommended for use in the NHS in England and Wales.
o Appraises new drugs and devices
• Clinical benefit
• Costs
• During appraisal NHS organisations make decisions on its use locally
o Once national guidance is issued by NICE it replaces local recommendations and promotes equal access for patients across the country.
o If expensive treatments are not approved, patients are effectively denied access to them
o If approved, NHS organisations must fund treatments, sometimes with adverse consequences for other priorities
o Occasional exceptional rulings, e.g. Herceptin in early stage breast cancer. Treatment has a large cost, impact on allocation of budget resources elsewhere.
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What is implicit rationing?
Implicit rationing is the allocation of resources through individual clinical decisions without criteria for those decisions being explicit.
o Before 1990 NHS relied mainly on implicit rationing. Clinicians made decisions within overall budgetary constraints.
o Can lead to inequities and discrimination
• Open to abuse
• Decisions made on perceptions of “social deservingness”
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What are some advantages of explicit rationing?
Transparent, accountable
Opportunity for debate
Use of evidence based practice
More opportunities for equity in decision-making
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What are some disadvantages of explicit rationing?
Threat to clinical freedom
Very complex
Heterogeneity of patients and illness
Patient and professional hostility
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What is scarcity?
Need outstrips resources. Prioritisation is inevitable.
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What is efficiency?
Getting the most out of limited resources.
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What is equity?
The extent to which distribution of resources is fair.
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What is effectiveness?
The extent to which an intervention produces desired outcomes.
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What is utility?
The value an individual places on a health state.
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What is opportunity cost?
* Once you have used a resource in one way, you no longer have it to use in another way.
* E.g. The cost to hire someone is £20,000. It costs £400 for an overnight hospital stay for acutely ill children. If you hire someone, there is lost benefit to 50 children needing overnight observation (opportunity cost)
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In what 4 ways can you compare costs and benefits?
Comparing Costs and Benefits
1. Cost minimisation analysis
• Outcomes assumed to be equivalent, e.g. all hip prostheses improve mobility equally, so choose the cheapest one.
• Not often relevant as outcomes are rarely equivalent
2. Cost effectiveness analysis
• Used to compare drugs or interventions which have a common health outcome
• E.g. blood pressure in terms of cost per reduction of 5mm/Hg
• Is extra benefit worth extra cost?
3. Cost benefit analysis
• All inputs and outputs valued in monetary terms
• “How much would you pay to have your hip replaced?
4. Cost utility analysis
• Quality of health comes produced or foregone
• QUALY
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What is a QUALY?
The Quality Adjusted Life Year (QALY)
o Used since the 1970’s
o Allows for broad comparisons across differing programmes
o Uses a single index incorporating quality and quantity of life
o 1 perfect year of health = 1 QUALY
o Assumes that 1 year in perfect health is equal to 10 years with a quality of life of 10% of perfect health.
o Measured using a generic HR-QoL instrument, e.g. EQ-5D
NICE assess cost-effectiveness by integrating the QUALY score with the price of treatment using the incremental cost-effectiveness ratio (ICER).
This results in a Cost per QUALY Figure.
o < £20k per QUALY technology normally approved
o £20k - £30k judgements take account of
• Degree of uncertainty
• If change in HRQoL is adequately captured in the QUALY
• Innovation that adds demonstrable and distinctive benefits not captured in the QUALY
o > £30k per QUALY technology needs an ‘increasingly stronger case’
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What are some criticisms of QUALYs?
o Do not distribute resources according to need, but according to the benefits gained per unit of cost
o Technical problems with their calculations
o QUALYs may not embrace all dimensions of benefit; values expressed by experimental subjects may not be representative of the population
o RCT evidence
• Comparison therapies may differ
• Length of follow-up
• Atypical patients
• Atypical care
• Limited generalizability
• Sample sizes
• Statistical models can address some of these problems, but still not great.
o Controversy about the values they embody
