Consumer health information practices: Strategies and perspectives of people with chronic illness

1
Consumer health information practices Strategies
and perspectives of people with chronic illness

• Maude Frances
• Research Resource Manager
• National Centre in HIV Social Research
• UNSW Library Ad Hoc Seminar Series
• 12 August 2005

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• An investigation of information practices of
  people with hepatitis C
• Master of Information Studies
• School of Information Systems, Technology and
  Management and National Centre in HIV Social
  Research

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Outline of presentation

• Research aims and method
• Changing research and health environments
• Literature review
• Preliminary findings

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Aims

• to understand how people with hepatitis C
  access health-related information, especially
  online information
• to describe how this information is integrated
  with, and how it relates to, other sources of
  information
• to examine information practices within a
  sociocultural framework

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Aims (cont.)

• to understand criteria used by people with
  hepatitis C for assessing the validity of
  information
• to identify impediments to accessing accurate
  and appropriate information

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Design and method overview

• exploratory
• multimethod
• quantitative online survey
• qualitative interviews
• transdisciplinary
• medicine and public health
• sociology
• information studies

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Changing research and health environments

• DESTHoughton, J. W., Steele, C., Henty, M.
  (2003). Changing research practices in the
  digital environment. Canberra Department of
  Education, Science and Training.
• NHMRCNational Health and Medical Research
  Council (2005). A model framework for consumer
  and community participation in health and medical
  research, December 2004. Author.

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DEST

• examines evolving research practices what
  the implications of these changes are for
  scholarly communication and the future
  development of the research infrastructure.
  (Houghton et al., 2003, p. ix)

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Key findings

• The emergence of a new mode of knowledge
  production is bringing with it new information
  access and dissemination needs. it will be
  necessary to take a more holistic approach to the
  development of the research information
  infrastructure and scholarly communication
  system (Houghton et al., 2003, p. x)

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Mode 2 research

Gibbons, M., Nowotny, H., Limoges, C.,
Schwartzman, S., Scott, P. Trow, M. (1994). The
new production of knowledge The dynamics of
science and research in contemporary societies.
London Sage. Nowotny, H. Scott, P. Gibbons,
M. (2001). Rethinking Science Knowledge and the
public in an age of uncertainty. London Polity
Press. Nowotny, H. (2003). Democratising
expertise and socially robust knowledge. Science
and Public Policy, 30, 151-156.
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DEST

• socially robust knowledge
• socially distributed expertise
• society speaks back to science

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DEST

The complexities of the social and political
world demand a widening of scientific-technical
expertise, exercises in comparative judgement and
the ability to move back and forth, that is, to
transgress the boundaries between specialised
knowledge and its multiple, many-layered (and
often unforeseeable) context of implication.
(Nowotny, 2003, p. 152)
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DEST

to embrace the political arena and the market
place and go beyond both. The agora is the
problem-generating and problem-solving
environment in which the contextualisation of
knowledge production takes place. It is populated
not only by arrays of competing experts and the
organisations and institutions through which they
bring their knowledge and experience to bear on
decisions taken, but also variously jostling
publics (Nowotny, 2003, p. 156)
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NHMRC

• consumer and community participation in research
• partnerships
• integral part of processes
• collaborations to strengthen quality of research

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NHMRC

• enabling consumer participation
• facilitate access to health and medical knowledge
• changing community practices
• understand what people are doing already

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Medical and public health literature

• concerns about quality
• unreliable, inaccurate, unregulated, biased
• questions about authority and accuracy
• inappropriate information on discussion forums

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Medical and public health solutions

• provide guidance about trusted sites (Coleman,
  2003 Griffiths Christensen, 2002 Kisely,
  2002)
• insert flags, checklists (Matthews et al., 2003)
• sites for authorised medical information,
  HealthInsite
• clear distinction between information for health
  professionals/doctors and consumers/patients

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Medical and public health solutions

• take the lead in building new relationships with
  their patients by using newly available internet
  technologies (Anderson, 2001)
• learn about the publics health-related internet
  use (Benigeri and Pluye, 2003)
• patients and their relatives are now accessing
  ever more information from ever more diverse
  sources with health professionals having little
  or no time to help them manage what they have
  found (Shepperd Charnock, 2002)
• information dissemination ? communicative
  processes (Cline Haynes, 2001)

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Medical and public health solutions

• medical end-users find or form sophisticated
  online and offline networks, which can help them
  deal with the task of interpreting complex
  medical information. (Ferguson, 2002)
• what patients do online is more complex and
  social than most health professionals realise
  (Ferguson Lester, 2002)

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US research on internet use

• internet most frequently used by people with a
  recently diagnosed illness, followed by those
  with chronic illness (Fox Rainie, 2002)
• 85 of US internet users with a chronic illness
  or disability have sought health information on
  the internet (Fox Fallows, 2003)
• 1997-2002 health usage of the internet in US
  grown at twice the rate of overall internet use
• 75 of Australians over 16 had internet access in
  March 2003 (National Office for the Information
  Economy, 2003)

21
Patients point of view

• Sullivan, M. (2003). The new subjective medicine
  Taking the patient's point of view on health care
  and health. Social Science Medicine, 56,
  1595-1604.

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Chronic illness literature

• online support groups used by people with
  difficult to cure illnesses, less understood
  conditions, conditions overlooked in traditional
  healthcare (Davison et al., 2000)
• 44 people with cancer use internet (Basch et
  al., 2004)
• privacy and 24 hour availability, usefulness in
  avoiding embarrassing face-to face interactions
  for sensitive issues (Ziebland et al., 2004)

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Chronic illness literature

• that internet health information sources are used
  alongside, rather than as a replacement for,
  print-based and other traditional materials (e.g.
  Charnock Shepperd, 2004 Wollin et al., 2000)
• 80 of people who use internet use other
  resources as well (Basch et al., 2004)

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Chronic illness reasons for use

• keep up with treatment developments
• assist with treatment decisions
• understand medical terminology
• medical consultation preparation and follow-up
• supplement face-to-face information from health
  professionals (Ziebland et al., 2004)

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Chronic illness various modes of use

• changes in information seeking according to stage
  of illness (Ziebland et al., 2004)
• time of diagnosis information about the disease
  and its social impactlater more practical
  information multiple sclerosis (Wollin et al.,
  2000)

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Social science research

• anonymity for sensitive issues (Nicholas et al.,
  2003)
• remote information access for isolated and hard
  to reach people (Madara, 1997 Pleace et al.,
  2001 Swindell, 2000)
• interactive internet facilities provide social
  support for people with chronic illness (White
  Dorman, 2001)

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Typologies and modes of use

• passive and active participants (Pleace et al.,
  2001)
• association between number of years of internet
  connection and use of facilities such as chat and
  discussion groups (Horrigan, 2001)
• critique of assumption of one-way information
  flow (Lee Garvin, 2003)
• models of information transfer ? exchange
• monologic ? dialogic modes of communication

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Typologies and modes of use

• lack of loyalty to authoritative sites
• tendency to move between sites rather than
  re-visit the same ones not the time to build
  dedicated accredited systems even if they
  boast perfect content (Nicholas et al., 2004)

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Critique of medical perspective

• blurred boundaries between producers and users of
  medical knowledge
• medical expertise discourse dismantled
• new cosmology of distributed information
• e-scaped medicine
• information gathered and evaluated from range of
  sources
• available to non-experts as well as experts
• (Nettleton Burrows, 2003)

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ELIS research

• health information as component of everyday
  practices for people with diabetes
• internet enables switching between production
  consumption
• health consumers use same scientific sources as
  medical professionals and researchers
• deviation from traditional information flow
• hybrid channel of information flow between
  source and consumer(Wikgren, 2001)

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Hepatitis C information practices

• 2001, 25.8 of (n504) use internet for
  illness-related information (Hopwood Treloar,
  2003)
• more 50 (n100), had internet access, mostly
  from home computer (AIVL, 2003)
• internet as a crucial vehicle in accessing
  drug users
• Hepatitis C Council of NSW community discussion
  forum
• no published research relating primarily to
  information practices of people with hepatitis C

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Research questions

• What strategies do people deploy for appraising
  information from the internet and other sources?
• How do people with hepatitis C manage
  information, including conflicting information,
  from various sources?

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Research questions

• How do people with hepatitis C experience and
  resolve anomolies between their everyday
  information requirements and what medical systems
  provide?
• How is information from the internet and other
  sources used in relation to information provided
  by health professionals?
• Is there a relationship between information
  practices and shared decision making relating to
  treatments?

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Broad-based initial searching

• Youve got to fill your head with as much
  information as you can. (Ray)
• I was hungry for information. (Fiona)

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Targeted and focused internet use

• So you go lookin through those and see what sort
  of links they have and eventually you get back
  to some really good sources of information. (Ray)
• I went to a lot of websites and had a look but
  I soon sort of sorted them out. (Jonas)

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Preference for local sites

• My main one at the moment is NSW Hepatitis C
  Council. I found them to be the best. You know,
  its local found out that they were the most
  informed. (Wayne)
• Yahoo or Google ended up with a lot of
  American things and I thought I dont really want
  I dont know why, I didnt want American stuff.
  So, I finally found Australian stuff and from
  that Ive got to the Hep C Council web site
  (Nicola)
• looking to reputable and certainly
  Australian-based sources, that was important for
  me. (Fiona)

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Follow-up doctors information

• thats sort of what I understand from reading
  different things on the internet. When he
  explained it to me, I couldnt make head nor tail
  of it. (Michael)
• If he said something that I didnt quite
  understand Id check it up later Like, the
  internets got to be a bonus for em if I can
  find out information myself and get them to
  confirm anything Ive got my doubts about
  (Wayne)

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Clinical encounters

• if you talk to the doctors about internet,
  they, they seem to think oh dont believe
  everything you read on the internet, you know
  So, um different doctors have different opinions,
  you know. Youre better off to let them do what
  they do and keep your information for yourself.
  (Jonas)
• You talk to your doctors, they havent got the
  time to explain it to you. (Wayne)

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Verification from doctor

• I take everything with a grain of salt. If
  there's something that really catches my eye
  I'll write it down. I'll take it to him and say
  this is what I've read, this is what Ive heard.
  Is it true? (Michael)
• They know that Ill that especially with me,
  that I do a lot of research and checking and,
  yeah, theyre fine. (Nicola)

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Levels of complexity

• Because you dont find it you dont find it in
  the doctors surgery, right. You find little A4
  pamphlets which just reiterate, reiterate,
  reiterate from one to the other - all the same
  thing. Nobody tells you anything new about it
  each time, they just tell you this is Hep C and
  this is how you can get it. (Ray)
• one of the things I like about the internet is
  that you can go searching for the level of
  complexity that you can cope with. (Fiona)

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Treatments information

• You just really cant head into treatment without
  knowing what youre in for you really want to
  know what that side effects are what the
  chances are of success, what treatments are
  available, what treatments are likely to become
  available if you can continue working. (Fiona)
• Ive gone to the frequently asked questions
  because I want to look up a bit more about PCR
  testing and things like that for treatment
  because Im just sort of wondering whats going
  to happen next. So, I wanted to know everything,
  you know, looked up about the liver biopsies and
  genotypes. So, I learnt all that through the
  website. (Nicola)

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Interactivity

• I dont chat but I read the notices I dont
  take an active involvement, but a sort of a
  behind the scenes look at it. (Nicola)
• I think its good that they have that chat night
  with professionals. (Nicola)
• I have an online diary - life journal which
  I've used quite a lot just to talk to other
  people there's one particular guy whose been
  fantastic for bouncing ideas off. (Michael)

43
PBS computers?

• I think I would have been very isolated if I
  didnt have internet when it came to hepatitis C
  Everybody who get hepatitis C, they should get
  a computer from the government. (Jonas)
• But its always good to know theres lots of
  other people out there dealing with it if
  youve got a question you can ask them - youll
  get twenty replies but its always a good thing
  to know because theres nothing worse than having
  questions and having nobody answer em. (Ray)

44
Multi-tasking

• The hep C thing is virtually all I do on it the
  internet and I do a hell of a lot of it because
  Im laid out on Saturdays, Sundays and all day
  today. I probably do a good twelve hours on
  the weekend looking for information as well as
  in the chat rooms. You sort of do both at the
  same time because the chat rooms go quiet so you
  sit around in there sort of thing while you have
  a look at other things and then every night I
  get on there for an hour when I get home. Just
  go in and see regular people type thing and see
  how theyre doin and catch up. (Ray)

45
Peer review?

• I dont really have to go reading medical
  journals cause theres that many people that do
  it and if theres anything interesting or thats
  going to impact on anybody we hear about it just
  about as soon as its been brought out Id say
  itd be very hard for anything to get past
  theres some great people, you know, that I
  spose have proved themself over the time that
  their informations good, so you do trust I
  think if anybody put anything on there that you
  couldnt believe, somebodyd pick it up in about
  two seconds flat, because youve got people who
  do that all the time and some of that stuff in
  the journals is really wordy, and its great when
  theres people around that can, sort of, decipher
  that and put it down for everybody. (Andy)

46
Public debate

• If someone publishes a web page, noones going
  to stop them if theres anything false up there
  people dont generally understand about these
  newsgroups, that if you post anything thats
  rubbish, people will jump on you. So, I actually
  thought that that was almost the most accurate
  way, because it was like a public debate in a
  way. (Fiona)

47
Judgements of validity

• If you go to proper studies, the criteria is all
  down the bottom of what theyve done then you
  can pretty well rest assured that they will be
  correct but where its just sort of like a text
  page and theres no references to anybody, or
  references to who did the study you generally
  just wipe them. Youll read just to see what
  theyre saying, you know. (Ray)
• If I find some information, Id like to know
  where it comes from anything that I read from
  the Hep C Council, I tend to take it that its
  right. (Nicola)

48
Cross-checking information

• But if you go to a dozen sites and nine of them
  are saying the same thing, well you assume that
  theyre pretty right going to multiple sites
  that informations here, theyre saying the same
  thing here, same thing there, then you take it as
  being, pretty right. (Tim)
• basically I guess I probably look for consistency
  in what I believe to be true if I read
  something on a site and thought, gosh its not my
  understanding - then Id look to confirm it
  elsewhere. Id look for it on reputable sites.
  (Fiona)

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Critical understandings

• I wanted to hear a bit of first hand experiences
  too. Thats why you go to the chat rooms where
  people talk about it because obviously theyve
  got it and theyre doing it you cant believe
  everything you see in those places either, but
  then theres always some truth beneath the lies
  as well, isnt there? (Ray)
• Sometimes I think people who spent more time on
  that newsgroup were probably people who had more
  debilitating symptoms or conditions than people
  who were still maintaining a fair, you know, a
  busy life sometimes I wonder whether more
  depressive stories were up there just because
  those people had time to write, you know, sit
  around the computer to do it. (Fiona)

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Critical consumers

• I think the Alfred Hospital site was the first
  one I found that was - like a good Australian
  study of treatment on hep C it was a phenomenal
  report, but it wasnt sponsored by drug companies
  and it wasnt sponsored by any other funding than
  the hospitals own funding, right. (Ray)
• You see it pretty quickly whether theyre trying
  to sell you something or not, and thats, you
  know, tells you whether if theyve got a vested
  interest in the information that they give you.
  (Fiona)

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Everyday

• Youre sort of piecing these bits of information
  to really realise how its impacting on your
  future, because your vision of the future
  changes. So, youve got to try and incorporate
  this new information to what you thought your
  future was going to be. (Fiona)

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Concluding remarks

• everyday as well as clinical experience of
  illness
• DEST socially robust knowledge
• NHMRC- community and consumer participation
• health consumer perspectives need to inform
  health and information services