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JCPSLP
Volume 15, Number 1 2013
Journal of Clinical Practice in Speech-Language Pathology
Privacy of data
Informational privacy (control over the flow of our personal
information) is threatened through the use of the web
(Tavani, 2011). In a telehealth context, personal information
can be transmitted using a variety of technologies including
the traditional approaches such as email, videoconferencing
and the web or in new and emerging technologies such as
cloud computing (applications and services which are
offered over the Internet, collectively termed the
cloud
[Creeger, 2009]), and virtual worlds.
SLPs need to adopt standards, data policies and
procedures in order to minimise the impact of the above
technologies (Darkins, 2012). This could include a range
of privacy protection approaches such as phish detection
filters, the use of strong passwords and sign-out, the
use of anti-virus and anti-spyware protection, maximising
browser privacy enhancing capabilities, and the adoption
of authentication and encryption protocols particularly
when cloud computing and mobile technologies are utilised
(Tavani, 2011; Zhang & Zhang, 2011). In addition, Darkins
(2012) suggests organisations adopt a systems approach
(a holistic and analytical approach) as an overall model for
thinking about data privacy issues in the implementation
of telehealth programs. This suggests organisations think
about their telehealth as part of their overall health delivery
and not in isolation.
SLPs need to be aware of the
Privacy Act 1988
(Cth)
which regulates the way personal information is collected,
stored, used and disclosed (McDermid, 2008), and the
Privacy Amendment (Private Sector) Act 2000
(Cth). This
legislation extended the protection of information privacy to
include many private sector organisations, and organisations
that provide health services or store health-related
information (McDermid, 2008). The legislation includes a list
of ten national privacy principles which set the minimum
standard for information privacy. The intent of this legislation
is governance for organisations in the information economy,
and is of particular relevance to SLPs ensuring protection of
client confidentiality, safety and welfare.
Storage of data
Another issue of concern is the enormous volume of data
(e.g., practitioner notes, lab test results, scans) digitally
generated and the storage of that data. Telehealth
practitioners need to consider what type of data should be
stored, how much should be stored, for how long, and in
what format. Currently, legislation requires health practitioners
to store files for seven years after a client finishes treatment,
or until the child reaches 25 years of age. This requires
enormous data storage capacity. Telehealth providers are
considering the use of cloud computing as an option to
overcome their data storage dilemmas; however, storage in
the cloud provides its own set of privacy and security
concerns. Some suggest the use of
private clouds
, where
data is restricted to servers in specific locations, and the
development of standards and metrics to measure
performance and regulations compliance by cloud
computing vendors (Herold, 2012) will be important. This
emerging landscape may provide SLPs adopting telehealth
services or using other digital services with an alternative
solution, but will require preservation of ethical standards
required by SPA.
In conclusion
The web offers new frontiers like media rich telehealth and
virtual worlds for SLPs to venture into, explore and appraise.
These digital platforms offer new avenues for treatment and
education provision to clients. They also aid SLPs to deliver
those promoted on websites that are not evidence based.
Evidence based treatments have been ethically researched,
scrutinised by peers and have proof of their general
effectiveness. The opposite can be said for some web-
based treatments and therapies already in existence.
Second, non-research based information on a website may
be used by PWCD to self-diagnose and perhaps self-treat
their communication disorder. The risk for these people can
be significant in terms of financial commitments and wasted
effort techniques taught by unqualified people. Another risk
for PWCD could be loss of faith in the associated SLP
profession due to the technique not providing them with a
promised “cure” or “elimination” of their communication
disorders. SLPs have ethical duties to educate clients, their
families and carers, and the community at large, about
evidence based approaches that are known to be effective
and provide accurate and timely information about those
practices which are not evidence based (SPA, 2010,
Practice 3.1). Professional associations may play a role in
monitoring these sites. The SLP profession itself has a
responsibility to actively educate members and clients
about trusted websites and supported techniques. At the
very least, individual SLPs need to be able to make
informed and ethical comments about web-based
information if asked by clients (SPA, 2010, Practice 3.1).
Clinician–patient relationships
The interpersonal aspects of therapeutic interventions
delivered via the web need careful consideration and
management by SLPs to fulfil their ethical duties to their
clients (SPA, 2010, Practice 3.1).
A growing area of ethical concern in the use and
expansion of virtual worlds, telehealth and other web-
based services is the impact that they may have on the
“traditional clinician–patient relationships” (Stanberry, 2000,
p. 615). Cornford and Klecun-Dabrowska (2001) caution
against the “substitution of care with treatment” (p. 161).
Very little research has been conducted to examine patient
satisfaction with the quality of interactions in telehealth
relationships (Ellis, 2004), although recent work and
understanding has suggested that client satisfaction and
acceptance of telehealth is on the rise (Theodoros, 2012).
It is possible that the impersonal nature of some
telehealth practices and virtual worlds hosted by automated
avatars, or even completely unmoderated, may increase a
sense of alienation commonly experienced by some clients
(Bauer, 2010).
Developers of on-line practices must be careful to
supply information to clients and potential clients in easily
understood language. Checking the comprehension of
information provided to clients is easier to do in face-to-
face clinical settings. In on-line and largely unmoderated
environments information needs to be provided with
attention to the complexity and language used (Worrall,
Rose, Howe, McKenna & Hickson, 2007).
Privacy and data storage
The Code of Ethics requires SLPs to protect client
confidentially and ensure the safety and welfare of their
clients (SPA, 2010, Standards 3.1.4 and 3.1.7). The use of
web based speech-language pathology services and digital
records create additional complexities and ethical concerns
for both clients and SLPs to manage. Telehealth and virtual
worlds, as well as older technologies like email, require the
storage, retrieval and transmission of various forms and
levels of personal data concerning users at both client and
practitioner levels.