Lyme disease is a controversial illness caused by tick-borne bacteria. Researching Lyme disease presents challenges due to conflicts between patients and doctors over diagnosis and treatment. Using social media to survey Lyme patients has advantages like reaching geographically dispersed patients easily, but also disadvantages like patients self-selecting and technology limitations. The politics surrounding Lyme disease can influence the research process by making patients reluctant to participate or making it difficult to influence policy. Combining research methods and addressing ethical issues are important when studying such a complex illness.

1. ‘Lyme Research UK’
and Tick Talk Ireland
- community group - aims to engage
with research to improve policy and
practice on tick-borne infections

3. KATE BLOOR – Social Researcher
in policy contexts, Lecturer,
Community work, Lyme patient
Academically – BSc Human Sciences,
MSc Sociology of Health and Illness,
MSc Science and Technology policy.
Eg. Use of scientific evidence in
policy-making, research methods, etc

4. What is Lyme disease?
Spirochete infection from tick
bites, that can cause acute and
chronic neurological, immune,
rheumatological, psychiatric,
illness and wide variety of
systemic and complex
conditions
http://www.searchnbn.net/imt/?mode=SPECIES&species=NHMSYS0000730335

5. Accurate information???
http://www.searchnbn.net/imt/?mode=SPECIES&species=NHMSYS0000730335
http://www.searchnbn.net/imt/?mode=SPECIES&species=NHMSYS000073033

6. Survey questions about patient's
experiences include ;
•When and how they were exposed to
ticks
•How they were tested and diagnosed
•Responses to treatment
•Attitudes and opinions towards the NHS
and private care
•Prevention issues

7. • Why is Lyme disease a controversial
politicised illness?
• Why use social media to contact people with
Lyme disease?
• What influence does the politics behind Lyme
disease have on the research process?
• Disadvantages of using social media
• What are the problems of using social media
in this particular context?
• The experience of doing this kind of work

8. Why is Lyme disease a
controversial politicised
illness?

9. • Conflicts between patients and
doctors
• A new and emerging pattern of illness
that is difficult to prevent or treat
• Historical issues around policy and
practice: International protocols and
guidance on diagnosis testing and
treatment ILADS/ IDSA :
International Lyme and Associated
Disease’s Society/ Infectious Disease’s
Society of America

10. • International politics around insurance
companies, medicine, and health
systems
• Difficulties in dealing with scientific,
medical, clinical uncertainty – research
gaps in knowledge
• Vociferous and vocal patient groups,
(certain social classes more likely to be
diagnosed?)
• Social dynamics of ‘denial’ and
‘vilification of patients’ and those who
treat them

11. • Ethical issues around patient's
experiences - ‘abuse’ of patients
in the health system
• Misdiagnosis, delayed diagnosis,
Severe illness, lack of care from
NHS?
• Patients empowered by
technology?

12. • Mild (or too complex), self-
limiting
• Easy, (or difficult) to diagnose
• Easy (or too difficult) to treat/
no treatment/ symptomatic/ M.E
• Uncommon except in endemic
areas or certain risk groups
Community of Patient’s think
Doctor’s see Lyme disease as;

13. Have we been here
before?
Syphylis, HIV,
tuberculosis ???

14. Why use social
media to contact
people with Lyme
disease?

15. • Patients with Lyme disease very likely to
use technology – chronically
ill,homebound
• Strong social network amongst a small
group of patients
• Facilitated by social networking on a
local, national, and international, level
• Social media is fast and efficient at getting
information out quickly and getting
information gathered quickly
• Patients geographically dispersed

16. • Involving patients in the research
process is easier
• Social media is accessible (for some) ‐
new ways of gathering data and
analysing it
• Use and dissemination of research
findings is quick and easy
• Involving people in research,
reflecting their concerns is possible
and inexpensive

17. • Research can quickly feed into
‘community action’
• Automated survey questionnaire
design, data collection and analysis
easier to use
• Opportunities for flexible approach
to design, eg’s. questions changed
or can gather new information
quickly

18. What influence
does the politics
behind Lyme
disease have on the
research process?

19. • Patients are reluctant to participate ?
fear retribution from the health service
• Patients are desperate to provide
information because of their motivation is
strong
• Critical views of services for patients in
research, do not exist, researching this is
challenging and demanding

20. • Creating an ‘alternative’ view from patient’s
perspective is methodology difficult
• Alternative views of the diagnostic process etc are
difficult to capture with internet survey
• Difficult to influence the policy‐making process
with patient orientated research eg. Not
necessarily ‘peer reviewed published’ research
(but could be)
• Being researcher and patient ? Dilemma’s in role
and perception, impact on how see research
issues

21. legal reasons, complaints and petitions,
GMC/ ombudsman, clinical negligence
etc ‐ eg one patient cannot speak about her
case, children taken away, psychiatric treatment,
munchausens by proxy ;
Doctor has recently been investigated
by GMC and decision about case not yet
finalised – ‘high profile’ cases in the
medical/legal world including case
involving death

22. Disadvantages
of using social
media: social,
ethical issues

23. • Social media can be demanding for
people that are very sick eg. cognitive
and neurological problems
• Mental and physical health issues for
patients – impact of research?
• Patients have their own language to
describe the experience they have
• Very sick people or people who have
become substantially better ‐ more likely
to miss the opportunity to participate

24. What are the
problems of using
social media in this
particular context:
research issues?

25. • Limitations of software, it doesn't
work like you wanted to, difficult to
forsee
• Technological failures, and mistakes
• Confidentiality/ ethical issues
• Difficulties in piloting and testing the
research process

26. • Patients self ‐define and are self‐
selecting
• Information may not be as accurate
as other ways of approaching survey
research (validity and reliability) ?
Does data reflect the reality, that a
patient or doctor may have of their
case?

27. • Difficult to fit the complexity of the illness
into a linear format; eg diagnostic process,
and patient experience isn't easily captured
quantitatively or qualitatively online software
• Patients explanations of this might not reflect
what doctors understand. Concepts of illness
and experiences of the health services, from
patients is a different reality to that of
doctors

28. Experience of doing
the survey: practical,
ethical, theoretical
issues

29. Final words:
•Need guide to help us, also
about methodology too (not
separate from technology)
•New techniques need to be
reflected on, and assessed

30. If factors such as those that operate for
Lyme patients exist we need;
•Mixture of methods (eg Triangulation?)
•Good ways of mixing and combining the
data analysis, and interpretation
•Ethical issues need to be addressed
•– Just because We Can, does not mean
we should