Please cite as: Kamel Boulos MN, Livewell Project Consortium. Livewell Project (project overview and early user feedback and impressions from the Summer 2014 pilot testing phase). In: Online Proceedings of Health Informatics Scotland 2014 Conference, Glasgow, Scotland, 2 September 2014. URLs: http://www.webcitation.org/6SIO8Vo19 and http://www.knowledge.scot.nhs.uk/his/events/health-informatics-scotland-conference-2014/presentations-and-audio.aspx http://www.slideshare.net/sl.medic/livewellhis-glasgow2-sep2014

1. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMPLiveWell –Promoting Healthy Living and Wellbeing for Parkinson Patients through Social Network and ICT TrainingMaged N. Kamel Boulos, MBBCh, PhD, SMIEEEProfessor of Digital HealthThe Alexander Graham Bell Centre for Digital HealthUniversity of the Highlands and Islands maged.kamelboulos@uhi.ac.uk & the LivewellProject ConsortiumHealth Informatics Scotland 2014Glasgow2 September 2014

2. 02-09-2014 2
This project has been funded with the support from the European Commission. This publication reflects the views only
of the author, and the Commission cannot be held responsible for any use which may be made of the information
contained herein. Project Number: 527943-LLP-1- 2012-1-PT-GRUNDTVIG-GMP
Abstract
http://www.webcitation.org/6SIO8Vo19-http://www.knowledge.scot.nhs.uk/media/CLT/ResourceUploads/4051200/ HISC2014Programme-final-2808.pdf

3. •Overview of project (2012-2014)
•Hands-on using the platform (live demo + some early user feedback and impressions from our Summer 2014 pilot testing - http://www.livewell-community.eu/)
Agenda (2 Sep 2014 at 13:35, Regent Room, Grand Central Hotel, Glasgow)
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
3
Facts: • About 1.2 million people in Europe (127,000 people in the UK or 1 in 500 people) have Parkinson’s disease (PD). Its main symptoms include tremor and stiffness, which affect daily activities. PD patients often suffer from social exclusion and depression due to the progressive lack of control over their condition. Eventually, most of them require constant care, leading to huge socioeconomic burdens.
• Almost half of all EU and UK patients show limited health literacy. This poses an additional challenge when developing online education material for those patients.

4. •A 24-month, seven-partner, EU-funded project under Lifelong Learning Program—LLP (started in October 2012).
•The main aim is to develop an innovative Web-based Training and Social Networking System that targets:
–Parkinson’s disease patients -to help them better self-manage their condition and to promote their well-being and inclusion;
–Caregivers-to provide access to information, training and greater online community support;
–Healthcare professionals -to enable them to monitor patient’s participation in activities to improve rehabilitation; to access patient- completed, clinical symptom checklists; and to communicate with patients online (via private asynchronous messaging).
The Livewellproject –overview
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
4

5. 1.INOVA+ (Portugal), co-ordinator
2.Plymouth University (UK), whereI previously worked until end of July this year
3.Parkinson Association of Madrid (Spain)
4.Bitmediae-Solutions GmbH (Austria)
5.Ana Aslan International Foundation(Romania)
6.Samvilehf. Fjarkennsla.com (Iceland)
7.BrežiceGeneral Hospital (Slovenia)
In addition, Parkinson’s Disease Associationsin all seven countries are involved in some way in the project (e.g., Parkinson’s UK (PUK) and Cure Parkinson’s Trust, with recruitment of participants).
Partners of the Livewellproject
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
5

6. The Web-based platform has two main features:
Training with e-learning contents:
–Offers information packages; and
–Interactive training contents, games / exercises and quizzes.
Social community:
-A learning and discussion platform;
-Facilitates interactions between PD patients, carers and clinicians, within the confines of privacy; and
-Enables exchange of ideas / community and peer-to- peer support.
The Livewellplatform -main features
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
6

7. Needs analysis and desk research:
To identify the needs of end-users –this involved patients (27), caregivers (21) and healthcare professionals (43) from the different partners’ countries, plus literature survey.
Training and educational contents (in 7 languages):
Designed to meet identified needs;
We adapted materials from known sources (e.g., PUK patientinformation resources, with PUK’s kind permission). Releasedunder licence.
Platform development (ICT):
Using Xerte, an open-source, advanced HTML5technology developed at the Universityof Nottingham; HTML5 enables a single deployment to be accessed by different device formfactors (e.g., a smartphone, a tablet, a laptop or a desktop computer) withoutthe need to reformat content for each device.
Testing:
Pre-pilot testing (2013)–for usability (involved eight potential end-users);
Pilot testing, Summer 2014, at seven centres across Europe, involving about 100 PDpatients, 60 caregivers and 10 healthcare professionals.
How the platform was developed
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
7

8. Objectives of the pilot testing -to find out:
How useful potential end users find the platform and the training contents; or in other words:
Whether the platform and the training contents meet the needs of end users.
The steps involved in the pilot testing:
Initial (1st) Livewelldemonstration meeting with all recruited participants at each of the partners’ institutions;
End users are then given the chance to use the platform at home (1-2 weeks);
Online questionnaire to provide feedback following the above steps –the link to the questionnaire (in user’s language) was sent to all users by email; and
Follow-up (2nd) meeting (focus group with select participants) at each of the partners’ institutions.
Pilot testing of Livewell
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
8

9. Online questionnaire (English version)

10. Online questionnaire (English version)

11. •URL: http://www.livewell-community.eu/
•After the tour, I will mention some early user feedback and impressions from our Summer 2014 pilot testing.
A brief live tour of the Livewellplatform
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
11

13. 02-09-2014 13
This project has been funded with the support from the European Commission. This publication reflects the views only
of the author, and the Commission cannot be held responsible for any use which may be made of the information
contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP

14. 02-09-2014 14
This project has been funded with the support from the European Commission. This publication reflects the views only
of the author, and the Commission cannot be held responsible for any use which may be made of the information
contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP

15. •Content: Available in 7 EU languages, the modules are clearly structured and include comprehensive information on their respective topics. Each module starts with an overview about what the user can expect to learn in the module. It also gives information to whom this module is addressed (caregiver and/or patient). Each module ends with a summary of achieved learning outcomes.
•Presentation: The design of the slides is clear. The slides are not overloaded (some patients disagree). A good mixture of information, further links, pictures and quizzes ensures that people don’t get easily tired, even when the number of slides per module is quite high.
•Inline help: The introductory module (Module 0) is very useful to learn about how the platform works and how actions, e.g., answering quizzes, can be taken by the user.
Positive feedback: what our external evaluator liked
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
15

16. •Mostly usabilityissues: many of these issues are due to current Xertepackage limitations.
•Some educational-content-related issues, including an issue about content usefulness for users with already advanced PD knowledge.
•A routineworkflow integration issueraised by some clinicians (UK).
•One security issue (no HTTPSin private messages), raised by a highly-computer-literate UK user.
Suggestions for improvement and what users did not like
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
16

17. •UK: The modules need a decent search facility that searches all modules at one time to dig up all the relevant info in one go, e.g., to instantly find slides about 'back pain'.
•UK: A module slide bookmarking function would be a desirable feature to quickly return to favouritedslides within modules at a later time.
•UK: Other desirable features: a ‘read aloud’ function of slide text (text to speech) and module printing (or alternative PDFs that can be printed for modules 1-7).
•External Evaluator: Module 6: healthy diet recommendations -it has been suggested to provide links to some recipes, to inspire readers, so that they don't get the feeling that they are very limited in their nutrition options.
•UK: To make the modules of long-term value someone must take on the task of keeping the site up-to-date; for instance for the list of benefits available in the UK.
Suggestions for improvement and what users did not like
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
17

18. •Multiple test sites: Getting a user name and password (for the messaging, communication and activity logging parts of Livewellthat require users to log in) was not easy and did not always work. One patient described the situation, saying: “It took a long time to find out what was going to happen (in contrast setting up an account from almost any online shopping site is much quicker)”. Also, after logging in, the ‘activity log’ section was sometimes unavailable.
•Feedback from UK: Patients are concerned that there is no way for them/no directory to identify the correct usernames of other registered members in order to be able to send them messages. (This was partly by design to protect users from receiving unsolicited e-mails from other unknown users.)
•UK: Nurses expressed concern that they have no time to use the proposed system (regularly read and respond to messages/monitor patients’ activity logs). But they could see great value in patients bringing with them to the consultation printouts of their completed Livewellchecklists and diary.
Suggestions for improvement and what users did not like
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
18

19. •UK: Some slide links are broken (also reported by users of other language versions). A few slides are missing or would not appear. There were some typos here and there, and some text portions/questions are written in a rather poor English (for the English language version of the modules).
•UK: When increasing module slide font size too much with Ctrl+ (keyboard), some of the slide text might disappear and in some browsers, there are no scroll bars to indicate the presence of extra (hidden) text or access it. Also the main Web site has two buttons for changing font size, but these do not apply to modules (in modules, font can be changed either via key board (Ctrl+/-) or touch (pinch to zoom)). This inconsistency was felt to be a bit odd and confusing.
•UK: To read a module’s three-line summary, you have to first click its link on the module index page at http://www.livewell-community.eu/menu-e-learning. It was felt by one patient that putting all 7 modules’ summaries on the same page (i.e., at http://www.livewell-community.eu/menu-e-learning) below their corresponding links would be more user friendly.
Suggestions for improvement and what users did not like
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
19

20. •Feedback from Slovenia: Patients with tremor could not click the mouse in a precise manner to navigate through each module. Program (platform) collapses after multiple imprecise mouse clicks. Patients suggested that they would better use keyboard buttons (F1 for Module 1, etc.), if offered, and/or a different presentation that minimisesthe need for clicking. Current presentation was found to be more appropriate for caregivers who don't have tremors.
•Slovenia: Also patients found spaces between lines to be too small for them. They were reading the text with difficulty, perhaps also because, in their view, there was too much text per page. Patients suggested that text should only occupy 2/3 of each whole page.
•Slovenia: A good number of patients and carerswere already familiar with Livewell’smodule contents. They were expecting to discover new information and learn about new PD findings and new treatments, but couldn’t find any.
Suggestions for improvement and what users did not like
02-09-2014
This project has been funded with the support from the European Commission. This publication reflects the
views only of the author, and the Commission cannot be held responsible for any use which may be made
of the information contained herein. Project Number: 527943-LLP-1-2012-1-PT-GRUNDTVIG-GMP
20

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