2. 1. Information, values
and beliefs
We need to recognise the relationship between
information, values and beliefs
•How was information constructed in the past?
•How do we filter information?
•How do our values and beliefs affect how we access,
use and store information?
• How does information construct our identity? Eg
Facebook: audiences, surveillance
3. Information bias
– In the past, information tended to reflect white
heterosexual, able bodied researchers who rarely reflected
on how their own identities impacted research (Berger and
Kitzinger, 1999)
– Information tends to reflect the author, even if the word ‘I’
has been avoided in the writing
– Information can also reflect the interests of funders and
governments
– Information is never free from bias
4. 2. Economic issues
•It costs to store information and this can impact how long
you have access to studies
•Research also costs which means when there are cuts to funding, the quality of
research is affected. Researchers might also present research in a way that gives
them more political influence and more funding. They might also find themselves
paid to prove changes in practice
• A good example to this are boot camps as an ‘effective’ intervention
•Multi-Systematic Reviews work well as a check for practitioners as they review
all studies (but can be biased towards scientific methods)
5. Economic issues cont’d
• Other costs on information include but are not limited to:
• Technology
• Money talks: media, marketing, corporations
• Business vs free speech eg Google and China
• Training
6. 3. Cultural issues
Cultural (broad definition) considerations centre around
how information is:
•transmitted
•collected
•used
•disseminated
Cultural politics: Prejudice, discrimination and racism
can be perpetuated by information
7. Comparative colonialisms (1980) (Cram 2002)COLONIALISM
MANIFESTED BY:
POLITICAL COLONIALISM SCIENTIFIC/RESEARCH
COLONIALISM
1. Removal of
Wealth
Exportation of raw materials
and wealth from colonies for
the purpose of “processing” it
into manufactured wealth
and/or goods.
Exporting raw data from a
community for the purpose of
“processing” it into
manufactured goods (i.e.,
books, articles, wealth, etc.)
2. Right of Access Colonial Power believes it
has the right of access and
use for its own benefit
anything belonging to the
colonised people.
Scientist believes s/he has
unlimited right of access to
any data source and any
information belonging to the
subject population.
3. External Power
Base
The centre of power and
control over the colonised is
located outside the colony
itself.
The centre of knowledge and
information about a people or
community is located outside
of
the community or people
themselves.
8. Cultural challenges to
the Scientific method
– I am aware some quarters of the academic world will demand
proof and corroborate evidence . I have none other than the
fact that I am Samoan (Wendt, 1984)
– Whoever controls research, controls knowledge (Maaka, 1999)
– If the information of knowledge that comes out of the project
is misused, it is them, not the study investigators who have to
return to those communities and face the consequences”
(Crengle and McCreanor, 2006)
9. Treaty implications
1.Partnership
refers to an ongoing relationship between those who have information
and others
Participation
a principle which emphasises positive Mäori involvement in all
decisions around information use
Protection
the principle whereby the Crown is obliged to actively protect Mäori
interests, including information
10. Information and the Treaty
of Waitangi (Professional
competencies)
Beliefs:
1. Commitment to Te Tiriti o
Waitangi
1. Supporting Maori rights, authority
and status
2. Ensuring cultural safety
3. Self-determination by Maori to own
pathways of healing
11. Professional competencies
cont’d
Knowledge:
1. Knowledge of Te Tiriti o
Waitangi
2. Describe social and historical
factors affecting Maori
1. Understand rights of tangata
whenua
2. Can describe impact of colonisation
3. Can describe social and economic
factors affecting Maori
12. Feminist perspectives
Feminist perspectives questions socialisation and power
structures. It is an approach that is primarily about
experience and empowerment. It analyses the cultural
and class assumptions that may influence information
about women. It explores how information is used and
dissemination that often perpetuates oppression and
inequity. It alerts us to marginalisation or anthologising
of all minority (not just women) groups’ experience and
challenges assumptions.
13. Implications for
information use etc
• Partnership, protection and participation
• Motivation for and selection of questions carefully
chosen
• Purpose is critical and political
• Research is non-hierarchical
• Herstory(womyn’s stories ) are important
• Share power in the methods and analysis
• The importance of acknowledging bias
14. Disability and
information
– Social model of disability
– Who is a “knower”?
– Who are the experts? No homogenous group
– Lived experience of disability
– Researchers often come from a sympathy point
of view
– Research must transform and is “emancipatory”
– Enabling not disabling
15. Implications for
information use etc
•Make sure it doesn't discriminate further
•Power of words, verbatim useful in research and writing
•Recruitment in research; a consumer group can’t speak for
all
•Ask: is disabled researcher powerful?
•Move beyond medical models of anaylsis to what really
matters
16. Gay community
– Queer research 10 years old
– Gay/lesbian/transgender traditionally framed through
Western eyes of pathology
– Suppressed history
– Language important eg transgender is transported from
dominant culture
– Have reclaimed label
– Strong political, cultural and social group
17. Ethnic communities
• Traditionally research done “on” ethnic groups
• Information gleaned from research findings: Who
owns the findings?
• It is ethically responsible to give feedback
“Repeatedly in my research I have met people
participating in research previously and not receiving
feedback about the outcomes. This experience
frequently makes people reluctant to be involved in
other research” (Oliver, 1996.
18. 4. Ethical issues
– Codes of Ethics (DAPAANZ, NZAC, NZCCA, Ara Taiohi)
– Power to manipulate and transform information
– Use of names, faces etc
– Consent process
– Accessibility-web design etc
– Can we trust sources? Can we advise clients based on
information we gather?
19. Ethics: what is right and correct
Often an objective set of criteria (Code of Ethics)
Information moves faster than rules can be formulated to
govern it, how information is used may be left up to you with
the guidance of your personal ethics
20. Informed consent
• Two central aspects:
- Disclosure & free consent.
• Origins of informed consent.
• Informed consent requires a consent that is competent,
knowing, and voluntary (Gillick 1985)
• The process of informed consent:
- ongoing.
- Includes a discussion of the limits of confidentiality.
- Organisational examples of ‘your health information, your
rights’
22. Limits to confidentiality
are…..
• Harm to self
• Harm to others
• Harm from others
• Children/elderly
• Court orders
• Confidentiality is discussed at the beginning and
reviewed/reminded regularly (if required)
• Eg: confidentiality forms in agencies
23. Duty to warn/protect –
over-rides confidentiality
•Self
•Others
•From others
How do we decide on this?
24. 5. Social issues
Rate of technological advances
Information (especially technology) to lift people out of poverty
Implications for the increase use of Social Media eg Twitter, Facebook
Media and personal invasion etc
Social construction of information
Sociology of how information is disseminated eg, whose interest is being served?
25. Consider
• How has the internet contributed to the democratization of
knowledge production?
• Should internet access in third world countries take priority over
wealth creation?
• How does the speed of information contribute to strengthening or
challenging of the social order? Eg Arab Spring
• Does filtering or monitoring software on computers assist with the
social good or is it invasive ?
26. 6. Legal issues
– Code of Rights
– Privacy Act (and Health Information Privacy Code )
– Release of Information
– Copyright
27. a. Code of Rights (1996)
•Legislation includes provision of rules around information:
confidentiality, informed consent
•Code should be displayed in all health and disability agencies
•Provision of a Disability Commissioner and Health and
Disability Advocates
28. b. The Privacy Act (1993)
• The Act is primarily concerned with good personal information handling practices
• The Act contains twelve information privacy principles dealing with collecting,
holding, use & disclosure of personal information & assigning unique identifiers
• The principles give individuals the right to access personal information and to
request correction of it
• The Privacy Act provided for provision of a Privacy Commissioner
29. 12 principles
Principle 1, Principle 2, Principle 3 & Principle 4 govern the
collection of personal information. This includes the
reasons why personal information may be collected,
where it may be collected from and how it is collected
Principle 5 governs the way personal information is
stored. It is designed to protect personal information
from unauthorised use or disclosure
Principle 6 gives individuals the right to access information
about themselves
30. Principle 7 gives individuals the right to correct information
about themselves.
Principle 8, Principle 9, Principle 10 and Principle 11
place restrictions on how people & organisations can use or
disclose personal information. These include ensuring
information is accurate & up-to-date, & that it isn’t
improperly disclosed
Principle 12
governs how “unique identifiers” – such as IRD numbers,
bank client numbers, driver’s licence and passport numbers –
can be used.
31. c. Health Information
Privacy Code (1994)
– This code sets specific rules for agencies in the health
sector to better ensure the protection of individual
privacy. The code addresses the health information
collected, used, held and disclosed by health agencies.
32. (i)Legal requirements for
collecting and using
information
Consent
Ethics approval for research
•Copyright Rules at a glance:
Copyright law defines "fair use" for copying for the purpose
of criticism, review, news reporting, research or private
study.
Covered by WelTec licence
33. Plagarism
• Plagiarism rules at a glance:
Wrongful appropriation," "close imitation," or "purloining
and publication" of another authors "language, thoughts,
ideas, or expressions," and the representation of them as
one's own original work
