APPLYING MEDICINE 2.0 TO THE I-CAN
Managing the Needs and Rights of End Users
Stephan Ruppert
1,2
, Debbie Richards
1
1
Department of Computing, Macquarie University, North Ryde, Australia
2
University of Applied Sciences Hof, Germany
Samuel Arnold, Vivienne Riches, Trevor Parmenter
Centre for Disability Studies, Faculty of Medicine, University of Sydney, Lidcombe, Australia
Keywords: Collaboration, I-CAN, Web 2.0, Medicine 2.0.
Abstract: This paper considers how Medicine 2.0 features can be added to an existing e-health application known as
the I-CAN (Instrument for the Classification and Assessment of Support Needs). One of the biggest
problems with a social networking feature based around health concerns is the issue of privacy. Even though
participation is on a completely unsolicited, opt-in basis, there are access and privacy issues involved in
such a tool. A preliminary design proposal is presented which takes into account the needs, responsibilities,
rights and abilities of the (direct and indirect) users.
1 INTRODUCTION TO I-CAN
I-CAN do it! That is the motto of the Centre for
Disability Studies (CDS) Instrument for the
Classification and Assessment of Support Needs (I-
CAN) (Llewellyn et al. 2005). Since 1998, CDS and
partners have been developing a tool to assist
support services to determine the current and future
support needs of people with disabilities (Luckasson
et al, 1992). The I-CAN evolved into a web-based
assessment tool in 2007. Adding a web-base to a
pen and paper psychometric assessment allows
many new possibilities, including more sophisticated
data gathering, data management, scoring, reporting,
monitoring outcomes, costing and other e-health
applications. The I-CAN offers an efficient way to
manage and appraise individuals’ support needs.
The current I-CAN version 4.2 (Arnold et al.
2008) was released October, 2008 now using
completely web based software. It was developed
using Linux, Apache, MySQL and PHP (LAMP)
and is available online at http://www.i-can.org.au/.
The current target group for this software is
community support services or government
departments that want to assess data relating to the
needs of people with disabilities. These services can
purchase access to the system and do the assessment
online. A brief version of the assessment tool
focused on individual funding has been recently
developed. Furthermore, CDS offers hard-copy
manuals and facilitator packs, face-to-face training
sessions, a data entry service, telephone, and email
support for their customers. It is hoped online and
video training resources will also be developed.
I-CAN identifies the areas in which support is
needed in the current and/or future environment. The
higher level domains, based on the ICF, comprise
Health & Well Being and Activities & Participation
in daily life. The items within each sub domain,
shown in blue in Figure 1, are rated according to the
frequency and level of support required. Needs are
balanced on support important to and important for a
person, with a focus on the person’s long term
dreams and goals. The resulting support for the
person with a disability is seen as a means to
engagement, empowerment, and inclusion for a life
of quality.
I-CAN is designed to be used across disability
types and levels of impairment. It focuses more on
the support needed than on deficits or skills. The
trained facilitator, together with the person with
disability and key people involved in that person’s
144
Ruppert S., Richards D., Arnold S., Riches V. and Parmenter T.
APPLYING MEDICINE 2.0 TO THE I-CAN - Managing the Needs and Rights of End Users.
DOI: 10.5220/0002844301440149
In Proceedings of the 6th International Conference on Web Information Systems and Technology (WEBIST 2010), page
ISBN: 978-989-674-025-2
Copyright
c
2010 by SCITEPRESS Science and Technology Publications, Lda. All rights reserved
life complete the assessment and decide on future
support activities.
Figure 1: Domain structure of the current version 4.2 (I-
CAN 2008).
Web 2.0 has enabled the average person to connect
and communicate. The many social benefits
provided should also be accessible to persons with
disabilities. To that end, this paper proposes that
Web 2.0 technologies can be applied to I-CAN but
identifies that privacy, security and access issues
become heightened due to the nature of the domain,
data and the user. Before looking at those issues we
consider the current functionality of I-CAN and the
limitations to be addressed.
1.1 The Functions of I-CAN 4.2
Support services enter personal data of the person
with disability into the online system either directly
during the interview process (Figure 2) or afterwards
with the help of the pen and paper data recording
form that can be used if there is no Internet access
available. The data are stored on the I-CAN server
where each support service has limited access to
their section of the database, with further access
restrictions based on organisation departmental sub
groups.
Figure 2: Screenshot of I-CAN data entry form (I-CAN
2008).
After the support services enter the personal data
they can generate individual support needs reports
for any person using different document formats
(mht, rtf, doc, etc.). This report is similar to a
comprehensive discharge report, and has been used
for discharge and intake assessments. The report is
automatically generated by the website, and there
are also additional options to download only
summarized reports and task lists. The report shows
a qualitative Support Needs Breakdown, About Me
and Current Life Situation, etc. Statistical graphs
(e.g. Figure 3) show domains where support is
needed. These graphs can be used for classification,
comparison, monitoring change over time and
measuring outcomes. The photo upload function
allows the support services to upload pictures of the
people they support and generate a more
personalised report.
Figure 3: Statistical Summary of domain Support Intensity
(I-CAN 2008).
The personal data can be edited and small updates
entered into the system as needed. There are often
changes in a person’s life circumstance, health and
skills that result in changes in support needs. These
changes are tracked on the system, so it is possible
to monitor the development or decline of each
person over time and to predict possible future
support needs. The cost estimation function
calculates costs of providing services based upon the
actual formal services needed and award salary
rates. The outcome is an Excel worksheet (Figure 4)
that allows adjustment of on-costs and other
organisational costs to predict the costs of service
provision more accurately within the particular
setting.
APPLYING MEDICINE 2.0 TO THE I-CAN - Managing the Needs and Rights of End Users
145
Figure 4: Outcome of an I-CAN cost estimation (I-CAN
2008).
1.2 Current Limitations of I-CAN
In the current version I-CAN 4.2 only support
services have access to the system. This is a
requirement for some services, e.g. government
departments who may use the system to determine
individual funding resource allocation, or in forensic
cases, that require strict access control and
procedures. However, this limited access is
problematic for some organisations using the I-CAN
and limiting for some people with disabilities and
their families. The purpose of I-CAN is, among
others, to encourage and empower people to be
active members of society. This includes actively
taking part in their health care and their support
service arrangements. Currently, the participation of
persons with disabilities and their family
members/friends in I-CAN is limited to answering
questions during the typically annual semi-structured
assessment and interview process.
Currently the person with disabilities benefits
passively from the system. They get a better support
service because the health and support professionals
have more detailed information about the persons’
needs and how the person wants to be supported.
The question is, how can people with disability
and/or family members and friends be more
involved in I-CAN and benefit actively from the tool
outside of the annual interview process?
The answer to this can be found in Web 2.0
technologies and the possibilities for users to create
content. Medicine 2.0 is a term used to describe Web
2.0 technologies in combination with e-health
applications. According to Pagliari and colleagues
(2007) there is a mounting demand for flexible
access to personal health information, encouraged by
technological trends and policies promoting patients’
rights.
The following discussion will look closer into
Web 2.0 and Medicine 2.0 applications and consider
how these concepts may be applied to I-CAN 5.0.
2 A WEB 2.0 ENABLED I-CAN
CDS wants to empower people with disabilities to
actively participate in the support process.
Furthermore, CDS wants to enable the family or
friends of the person with disability to participate
and give feedback to the support services. They are
the people who live together with the person with
disability and can see changes in their health and
behaviours first, often before the support service
may notice changes.
However, it is important to consider that not all
people with disabilities are able to use a computer,
not to mention a complex online social networking
tool. Only a smaller percentage of the people with
disabilities who have participated in I-CAN
assessments to date would have the skills to use an
online social networking tool. However, certain
family members or friends of the person with
disabilities would be very interested to the idea of
having access to I-CAN, to give feedback and
updates through the year to support services or
search for and connect with people that have similar
disabilities or health conditions.
One of the primary limitations of I-CAN 4.2
discussed is that only support services have direct
access to the system, but no persons with disabilities
or other user groups. For a Web 2.0 enabled I-CAN
it is necessary to give these user groups access to the
system. The proposal for I-CAN 5.0 combines a
social networking tool, user based site, blogs,
forums and online community, as well as access to
the existing or redesigned assessment system. It
allows persons with disabilities, their friends/family,
and the support services and health professionals to
connect and interact with each other. It is a tool to
empower people to take responsibility for their own
health and to connect with other people with similar
medical history/conditions.
This section proposes what I-CAN with Web 2.0
features would look like and hopefully be
foundational for I-CAN 5.0. It is not the purpose to
present a fully functional and designed application.
2.1 User Classes & Characteristics
As mentioned previously, only a small percentage of
all users who have participated in I-CAN
assessments to date would be able to use a social
networking website. That is why there must be
different roles for persons with disabilities available.
While creating the profile, the support service,
health professional or family member has to decide
in which access category the person falls and create
WEBIST 2010 - 6th International Conference on Web Information Systems and Technologies
146
the profile correspondingly. There are seven
different types of users proposed for the I-CAN 5.0
social networking system (Table 1) with different
roles and access rights. These access levels may be
further divided into read / write access to particular
domains within the profile for particular persons.
Table 1: User types roles and rights.
Role: Description
Manager The user Manager is the manager of a
support service and has unlimited access to
all functions of the social networking
feature.
Staff Staff users have limited access to the social
networking feature.
Family/
Friend
This user is either a friend or a family
member of one person.
P1 A person with disabilities that has full
access
P2 A person with disabilities that has
modifying access
P3 A person with disabilities that has limited
access
P4 A person with disabilities that has no access
2.2 The Profile
The profile is the central piece of the social
networking tool. It contains all the information about
the members of the site. Every profile contains a
main section with a photo, name, age, and location
of the person. Furthermore, the user can set his
status in two ways. Either by entering a status
message or by activating an emoticon that shows the
mood of the user, based on the existing easy English
resource used in the I-CAN assessment “How happy
are you?” The user does not need to fill out all
information, and can leave sections that he or she
does not want to publish blank. Further, the user can
mark certain sections of their profile with varying
privacy, read / write access levels. For example,
allowing their mother to see most parts of the profile
except for the sections regarding sexuality, whilst
allowing care workers to read / write most sections
except long term goals and dreams.
A persons profile is based on the data that is
saved in the existing needs assessment. If a person
(or his/her family member) decides to participate in
the social networking tool, the support service can
create the profile for the person after the entry of the
needs assessment information. Alternatively, iI-
CAN 5.0 should allow for individual people outside
of a formal support service to register and join the
website. The creation of the profile could be done
automatically by I-CAN by taking information
gathered by the existing assessment tool.
The profile for persons with disabilities contains
the following two sections: 1) “to do” list for the
person and support providers, e.g. change diet plan,
monitor sleeping patterns, find more activities, etc.
2) documents prepared from support providers, or
family/friends about the person, like other assess-
ment reports, care plans, scanned documents, etc.
The support service and the person with
disabilities can decide together which of the
information will be visible for other users. They
have the option to lock/unlock information for other
users. Family member or friends of the person with
disability have the opportunity to create and edit a
profile as well. This profile does not contain the
same information as a profile of a person with
disabilities. The staff of the support service can also
create and edit a profile with sections relevant to
them. All access rights are modifiable, customizable
and to be implemented using access tables.
As service provision moves towards individual
funding arrangements, with people with disabilities
employing their own staff, having an online register
of disability support professionals, a profile of their
skills and experience, will facilitate people with
disability funding and employing support staff most
suited to the person’s need and preferences.
2.3 Adding Friends
A function of the new tool is to add friends to the
profile. Basically every user can become friends
with any other user. So for example, support staff
can add other support staff to their friends and share
their experiences. Persons with disabilities can add
people they meet online to their friends, or family
members can add other family members and share
information about their experiences with their
relatives.
In a similar fashion to social networking sites
such as Facebook, when a user adds another user to
his friends, an email is sent to the others users e-mail
address. The receiver can then accept the friend
request or deny it. However, for users P4 it is not
possible to add friends to their friends list. In this
case, an email is sent to the person responsible, be it
family or support providers and the person
responsible decides if this person can become friend
and see the profile.
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147
2.4 Sending of Messages
Messages can be sent publicly (via the Comments
section or forums) and privately. Users can send any
other users messages, public and private (except user
P3 and P4). The public messages can be entered and
sent in the Comments section of the receiver profile.
After the message was sent, the receiver receives an
e-mail in his inbox stating that a new message was
received from a user in I-CAN.
2.5 Forum
The social networking tool incorporates public and
private forums. The public forums can be used by
any registered user except P3 and P4 users and
offers a place for discussions of general interest and
posting of news and helpful information. The private
forums are for discussions particular to an individual
with disability, therefore are not visible for search
engines as well or uninvited users.
2.6 Search Function
Users have the possibility to search for other users in
the basic search (except P3 and P4). The advanced
search feature enables users to search for other users
based on criteria like name, age, location, goals and
dreams, and diagnosis.
2.7 Status Messages
Status messages can be set as well. Users can write
and change their current status anytime. ‘Happiness
status’ and ‘Health status’ can be set visually by
clicking on one of six available emoticons:
Very happy /Happy / A little happy/ A little unhappy
/ Unhappy / Very unhappy
Very healthy / Healthy / A little healthy / A little
sick / Sick / Very sick
2.8 Give Feedback
A “Give Feedback” feature is located in every
section of any user’s profile P1 – P4. Here, all other
users (except P2-P4) have the opportunity to give
feedback about this particular section. For example,
a family member could give feedback about the
current status of his/her relative. If the family
member notices changes in his relatives health,
behaviour, condition, etc. he could write a feedback
note in the relevant section. After sending the
feedback, the responsible manager gets an e-mail
with the message and the details to the person and
the section about which the feedback was sent. The
manager can then reply to this feedback and/or
delegate his staff to act accordingly. Staff members
and users categorized P1 can send feedback
messages as well. Alternatively, depending on read
/ write access levels, the user could directly edit the
profile or assessment.
2.9 Upload Documents
Managers and P1 users can upload documents to the
profile page of a P1 – P4 user as well. The manager
for example can upload assessment reports, service
summaries, etc to the profile, while a P1 user, a
person with disability that has full access to the
system, can upload scanned documents like doctor
reports, or other health related documents. The
advantage is that all documents are then available in
one central place, easy to access for the persons with
access rights to it.
3 DISCUSSION & CONCLUSIONS
One of the biggest problems with a social
networking feature based around health concerns as
introduced is the issue of privacy. Even though
participation is on a completely unsolicited, opt-in
basis, there are access and privacy issues involved in
such a tool. Who can see what information? What
does it mean if a person can see information that he
should not see? Especially in the health sector, this
is a much discussed topic. The question is, how can
I-CAN 5.0 set up access and privacy rules to prevent
any problems?
The access rights discussed are a preliminary
solution to cope with this problem, though the full
detail of assigning read / write access to particular
people to particular pieces of information has not
been outlined. It could be the case, for example, that
a person with disability has unresolved issues with
one of his family members and does not want to
grant him any more access to his profile. Or the
other case could be that the person with disabilities
wants to share more information with people outside
their immediate network. In both cases, I-CAN must
have the option to grant/deny access for any user to
particular sections at any time.
A special situation is given for I-CAN as well.
Only a small percentage of people who have
participated in the I-CAN assessment to date would
have skills to use a social networking website. Why
should I-CAN create a social networking tool? How
commercially successful would such a system be
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148
and is it worthwhile to proceed with the
development? The benefit from such a tool is mainly
for people with disability with good literacy and
computer skills or family members/friends of people
with disabilities. They can have access to all the
information and keep up to date with changes in
their relatives’ situation. They can share information
with other relatives in the forum and do not feel
alone in their situation. The support services of
course benefit from the feedback they get from the
family/friends and can react quicker and provide
better services.
How would family members, friends, health
professionals and support services be attracted to use
a system like this and keep using it over time? How
attractive is it for family members to participate?
How attractive is it for the staff of the support
services? How much time per day can they sacrifice
to look at all their e-mails and to answer them?
There could be a problem of resistance from staff of
support services to use the system. It is therefore
necessary to point out the extra benefit of these
tools.
The publicity that the launch of this site could
get would be very beneficial for CDS and would
attract more customers to the system. The
development would need significant investment, but
in the end I-CAN may be attractive for more
potential customers and could be a profitable
investment.
The development from Web 1.0 to Web 2.0
brought many new possibilities (e.g. Frost and
Massagli, 2008), even though many elements of
Web 2.0 are actually not a new phenomenon. Users
can not just generate content; but social networks
create completely new markets as well. Medicine 2.0
is an application of Web 2.0 and can be described as
Web 2.0 technologies combined with e-health.
Combined with the potential of electronic heath
records (Pagliari, Detmer and Singleton, 2007),
Medicine 2.0 opens up many new possibilities,
despite the issues such as privacy, information
inaccuracy, loss of control over information, etc. it is
the approach of the future in the health sector.
CDS, the creator of I-CAN, wants to benefit
from Medicine 2.0, and is looking for options to
extend their current system and implement Web 2.0
features. The next steps for CDS may be to scope
their current customers’ willingness to participate in
the social networking features described.
Other redesign features of a possible fifth version
of the I-CAN, such as a restructure of the assessment
tool, user interface, and additional functions such as
online rostering and a user alerts system are beyond
the scope of this paper.
ACKNOWLEDGEMENTS
The authors would like to acknowledge the on-going
contributions of the Royal Rehabilitation Centre
Sydney (ROYAL REHAB), the University of
Sydney, the Centre for Disability Studies (CDS) and
several non-government services in the development
of the I-CAN. The first three versions of the I-CAN
were supported by an Australian Research Council
(ARC) linkage grant, administered by the University
of Sydney with ROYAL REHAB and CDS as
industry partners. The third author has a small
royalty agreement in the I-CAN project. The
authors would like to thank Marie Cameron,
ROYAL REHAB, for her support developing the
Cost Estimation Tool.
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