Visualising absent groups in healthcare

Visualising Absent Groups in Healthcare: The Case of Diversity and Disability in AustraliaM R H A M I S H R O B E RT S O NM R N I C K N I C H O L A SM S M A R I A KAT R I V E S I S A / P R O F E S S O R J OA N N E T RAVAG L I A

Space and Place in Healthcare Vulnerability is linked to location – vulnerability factors and hazard events are spatially patterned

Location can include broader context and circumstances (spatial extension and scalar factors)

Scale is made explicit in knowledge production about vulnerabilities in spatial science

Spatial science can accommodate quantitative and qualitative perspectives and data eg. cognitive mapping

Implications for healthcare are substantial and fit within an expanded and expanding scientific paradigm ie. an emergent disciplinary field

Forms of vulnerability Types

Bio-genetic vulnerability Demographic profiles and factors including age, individual health status, genetic predisposition

Psycho-social vulnerability Location, social and psychological factors, including presence of carers and/or family and friends, sexuality, disability, symbolic capital

Epidemiological vulnerability Groups and populations, both genetic and environmental illnesses and conditions

Socio-economic vulnerability Social, economic, cultural/religious, social and economic capital

Spatio-temporal vulnerability Time, space, physical transitions, environmental

Inter-personal vulnerability Relationship between patient and practitioner, "difficult/problem clients", "non-compliant" clients

Cultural vulnerability Language, literacy, cultural and linguistic capital

Practice vulnerability Knowledge, skills, attitudes, stance of clinicians

Team vulnerability Communication, collaboration, peer relationships and pressures

Structural vulnerability Systemic, organisational, resources, media and public opinion

Organisational vulnerability Organisational, team, professional and locational culture and relationships

Environmental vulnerability ‘Natural’ disasters coupled with locational disadvantage, availablility and timeliness of rescue and clean up services

Travaglia (2009)

Why making vulnerable (absent) groups visible (in all senses) matters

There is a long and wide history of ignoring the vulnerability of specific populations in health and social care

• Sterilization of Indigenous peoples and people with disabilities without their consent (until the …)

• Racist history of highly regarded organisations (The Racial Hygiene Association is now …)

• ‘Acquisition’ of bodies and body parts for study/display without permission

• Medical experimentation on virtually all vulnerable groups

• The involvement of health practitioners in state sanctioned experimentation and torture

• In research there is a systematic lack of study of non ‘standard’ patients (including women, people from immigrant backgrounds and ‘minority’ backgrounds) • WEIRD (western, educated, industrialized, rich, and democratic) participants predominate in social sciences –

skewed perspective on gold standard research (concern for evidence based policy and practice) while at the same time there is an increasing ‘use’ of people in developing countries for riskier medical and pharmaceutical trials

Six biases against patients in EBM (Greenhalgh et al, 2015)

1. Most published research had minimal patient input (the available menu of evidence-based choices reflects a biomedical framing and omits options that might be more acceptable and effective)

2. EBM’s hierarchy of evidence tends to devalue the patient or carer experience (the patient is effectively ‘regressed to the mean’ and offered the option(s) that the average patient would benefit most from)

3. EBM conflates patient-centredness with use of shared decision-making tools (humanistic aspects of the consultation (empathy, compassion, the therapeutic alliance) are devalued and may be overlooked)

4. Power imbalances may suppress the patient’s voice (advice that is given, and management plans that are ‘agreed’, may be ignored (but may be inappropriate anyway since they are based on a partial picture)

5. EBM over-emphasises the clinical consultation (clinicians and researchers focus on ‘interventions’ that they can deliver instead of considering how they can support models of care in which they are no longer central)

6. EBM is concerned mainly with people who seek (and can access) care (a ‘hidden denominator’ of hardest-to-reach sub-populations may remain undiscovered, hence EBM may appear to have solved more problems than it actually has)

Greenhalgh T, Snow R, Ryan S, et al. Six 'biases' against patients and carers in evidence-based medicine. BMC Medicine 2015;13(1):200.

Social Policy and Social Order• Not everything is seen as a “problem” (eg men’s versus women’s heart

disease)

• Not all “problems” are seen as negative (ie normalized absence, pathologised presence)

• Not all “problems” are seen worthy of a response (eg which incidents spark public inquiries)

• These are ontological, epistemological and metaphysical (ethical) issues

This lack of visibility can be understood using the following equation

Normalised absencePathologised presence

Normalised presence

Ann Phoenix

Woollett A, Phoenix A, Lloyd E, editors. Motherhood: Meanings, practices and ideologies. London: Sage, 1991.

Normalised absence• Cultural construction of institutions• Differential power relations• Unrecognized historical and continuing institutionalized, cultural and individual

discrimination• Toleration of systemic absence of knowledge (the “too hard” “too soon” “too late” “too

costly” basket)• Hidden queuing (ie lack of effective communication or marketing of publicly funded

services)

This includesUncritical and uncontested theories of culture

• It is powerful because it is “hidden” in everyday assumptions (eg … Who pays for our healthcare? Who needs interpreters?) and language (eg bed blockers)

• Cultures have been presented VERY BADLY – simplistic definitions, checklists, heuristics, outdated representations, dominant or simplistic points of view

• Easier to ignore underlying systemic issues• Allows (some) practitioners to claim ‘too many cultures, too much information’

to learn• Fosters dependency (or denial) on ‘specialised’ staff, diversity “champions” or

those who share some cultural traits

Pathologised presence• Continuation of what passes for pseudo-anthropology (“Asians are

humble”) • Or continued focus on lowest common denominator (eg food as the most

pressing issue for community, and therefore the most appropriate indicator of service ‘quality’)

• Diversity still constructed as ‘otherness’ • Focus on ‘culture’ alone can lead to locating the ‘problem’ in client• Focus on ‘culture’ as only, or key variable can negate other differences,

concerns and/or similarities between clients and practitioners

What this looks like in practice for people with disabilities• Poorer access to all types and levels of health care; • Inappropriate environmental and design of equipment and treatment spaces and services (such

as the height of examination beds, accessibility of preventative healthcare caravans); • Limited clinician inexperience and lack of training in diagnosing and working with PWDs, • ‘Hyper-focus’ on the disability rather than the individual and their other conditions or concerns;• ‘Diagnostic overshadowing’ where symptoms are thought to be due to the person’s disability

rather than an new or unrelated condition;• Increased probability overall that health conditions to be misdiagnosed or untreated;• Patient difficulties in expressing pain; • Lower levels of participation in health care screening;• Lower levels of general or health literacy on the part of patients;• Poor or inadequate communication on the part of health care providers;• Lack of recognition of the concerns of patients and family members.

Based on the work of Professor Lisa Iezzoni

“Normalised” presencePerpetual liminality of vulnerable groups - Mick Gooda, Australian Human Rights Commission's Aboriginal and Torres Strait Islander Social Justice Commissioner, last week:

“… why are our mob always subject, to these trials, pilot programs, etc?”

“Normalised” presence• Privileged representations• Ethnicity as historically bound, frozen culture• Structurally silo-ed identities and the denial of emergent and or contested

cultural forms within and across communities and identities (Deaf/Albania/Muslim/Gay)

• Unquestioned ministerium of “representatives” (one size fits all)• Translation and access as the indicators of equity: ignoring equality of

utilization, safety, quality and outcomes• Acceptance of simplistic, decontextualized representations

Social Structure is Spatially Ordered• Space is a priori in our world and, consequently, often unexamined

• Yet our social structures are built in bricks and mortar

• The hierarchical position of social groups can be seen in the structure of our towns and cities

• The health, ill-health and disabilities of specific groups are usually spatially correlated e.g. rental accommodation and mental illness, homelessness, public housing blocks etc

• Invisible or uncommented groups are still physically present even when notionally absent – strategies of control and marginalization

• Social policy has always involved spatial strategies – especially concentration or dispersal e.g. in-relief versus out-relief

The future is already here - it’s just not very evenly distributed (Olchinsky)

Visualising absent groups

Example 1: Social Inequalities from Space: Chicago and Rio

Tim De Chant at http://persquaremile.com/2012/05/24/income-inequality-seen-from-space/

http://morgarruya.blogspot.com.au/2011/07/disparity-between-rich-and-poor-in-rio.html

Example 2: can you spot the pattern in these patient safety inquiries?

The Ely Hospital, Wales (1967) - long stay patients, elderly Banstead Hospital, Cowley Road Hospital, Friern Hospital, St. James's Hospital,

Storthes Hall Hospital, St. Lawrence's Hospital, Springfield Hospital, UK (1968) – elderly

Normansfield Hospital, Middlesex, UK (1978) people with learning disabilities Inquiries into the circumstances of the death of various children and others and

the first Ashworth Inquiry Ashworth, UK (1985-96) – children Stanley Road Hospital, Wakefield, UK (1986) – elderly patients Cervical screening services, Cartwright Inquiry, NZ (1987 – 1988) – women Chelmsford Royal Commission, NSW (1990) – psychiatric patients Ashworth Special Hospital Inquiry, UK (1999) - criminal psychiatric patients Rodney Ledward, UK (1999) – women Grantham and Kesteven Hospital, Allitt - Clothier Report (1992, 1994) - children Winnipeg Health Services Centre, Canada (1995 – 1998) – children Cervical screening services at Kent and Canterbury Hospitals Trust - Wells

Report, UK (1997) – women Royal Liverpool Children’s Inquiry (Alder Hey – Ashton report), UK (2000) –

children

King Edward Memorial Hospital, WA (2000 – 2001) – women Bristol Royal Infirmary, Kennedy Report, UK (2001) – children The Victoria Climbié Inquiry, UK (2001) – child RMH, Victoria (2002) - the elderly Southland DHB, NZ (2001-2002)- psychiatric patient Three Inquiries: The Kerr/Haslam, Ayling, Neale, Inquiries (2003-2004) –

psychiatric patients, women Camden and Campbelltown Hospitals, NSW (2002-2003)– locational disadvantage,

lower SES, people from NESB Shipman, UK (2005) - elderly women, isolated individuals Healthcare Commission, Clostridium difficile (Stoke Mandeville, Maidstone and

Tumbridge Wells), UK (2006) Bundaberg, Patel Inquiries, Queensland (2006) – locational disadvantage, lower

SES, Aboriginal and Torres Strait Islander patients E.coli Inquiry, South Wales (2006) – child Garling Inquiry Reeves, NSW (2008) – women; Garling Inquiry (acute healthcare), NSW (2008) Mid-Staffordshire Hospital, UK (2010,2013) – ED, elderly, confused, dying patients Bacchus Marsh, Victoria (2015) – women, stillbirths, newborns

Disability by Age and Sex 2009 and 2012 ABS DAC Surveys

0–4 5–14 15–24 25–34 35–44 45–54 55–59 60–64 65–69 70–74 75–79 80–84 85–89 90+0

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20092012

State and Territory Variations

Centre for Disability Research and Policy. Report of Audit of Disability Research in Australia. Lidcombe: Centre for Disability Research and Policy, Faculty of Health Sciences, University of Sydney, 2014



Living in slushy timesAustralia’s disability sector is dysfunctional, and transforming it is

complicated, arduous and stressful with the National Disability Insurance Scheme currently "immersed in problem-solving",

according to a new sector report.

This is already having implications for the health sector

http://www.probonoaustralia.com.au/news/2014/12/%E2%80%98stressful%E2%80%99-state-disability-sector-report#sthash.JbuJECXH.dpuf

Unequal Progress and Ineqaulities

Geographies of Disability

Total Disability in Metro Sydney

Total Disability by People Aged 75+

By Country of Birth: Italy

By Country of Birth: Vietnam

Conclusion - disability is one of many categories of person that is often absent from the research and policy evidence

- diversity characteristics are frequently reductive and reified as deterministic (it’s because they are…)

- being uncounted, discounted or removed from counting processes enhances existing inequalities (change and progress can exaggerate inequalities)

- past and present inequalities are inherently spatial in nature because social processes have spatial effects

- spatial science can improve this scenario moving forward (e.g. under NDIS)

- social policy and social care strategies need to be spatially enabled