APPLYING MEDICINE 2.0 TO THE I-CAN

Managing the Needs and Rights of End Users

Stephan Ruppert

1,2

, Debbie Richards

Department of Computing, Macquarie University, North Ryde, Australia

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

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

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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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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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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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