A telematics application for people with Parkinson�s disease
ParkService will validate the European market for a new service supporting people with Parkinson’s disease in their own homes. ParkService combines the secure exchange of video and messages through a simple television interface with “INDIGO” a unique mobility aid for people with Parkinson’s disease.
Issues being addressed
Parkinson’s disease (PD) affects 2 in 1000 of the general population and is the most common neurological disorder after Alzheimer’s disease. It is an incurable, progressive disease.
People with PD become socially excluded due to a combination of many disabling symptoms such as low mobility, speech disorders, and lack of confidence. In particular, many people with PD suffer from periods of near paralysis (“freezing”) which have a severe effect on their physical and emotional health. Two further problems are the poor access to suitable neurologists needed to treat this complex disease and difficulties in travelling easily to clinics. Since PD symptoms can fluctuate throughout the day, the most disabling symptoms may be frustratingly absent during a clinical appointment.
ParkService offers a support service connecting people with PD with each other and with their clinicians. With ParkService and a normal television remote control a home user can record messages and videos, possibly showing their symptoms at particular times of day and in certain situations and have them securely upload and shared just with the people they want. The potential of telematics to “bring the doctor into the person’s home” is very great, and particularly needed for PD.
However the most prominent feature of ParkService is the facilitation of INDIGO. INDIGO is a mobility aid which allows certain people with PD to break out of freezing and walk almost normally. INDIGO is wearable as a pair of glasses connected to a small electronic box. Under its previous name, ParkWalker, INDIGO won the EU Assistive Technology Award in the “New Territory” category in November 2004.
Goals of the project
The project will complete any customisation necessary for the EU-scope of the service, bridging the gap of distances, languages, experiences between people with PD and the medical community in order to run a set of pilot sites in Germany, UK and Italy. Combining the pilot site feedback with a further study of the requirements and obstacles of the EU-wide deployment, the certification and legislative issues, the project will result in a complete business plan and preparation for service roll-out.
Target user addressed
The primary user is the person with Parkinson’s disease in their own home. Anyone with PD can benefit from the telemedical networking and support service. PD affects 2 in 1,000 of the general population with little variability across cultures. Of an EU population of 450M, 900,000 people have PD. This number is likely to increase as a result of the ageing population; the incidence of PD in the population over 80 rises to 2 in 100.
Of people with PD, 70% are in the middle stages of the disease in which their mobility is affected but not beyond the reach of assistive technologies like INDIGO. Therefore the potential market for INDIGO may be as large as 600,000 but it is likely to be a sub-group of this (to be estimated by this project).
The secondary users of Parkservice will be PD Clinicians. This term is used widely to include neurologists, speech therapists, physiotherapists and PD nurse specialists. There are well established standard diagnostic tools and therapies for PD that have been validated via video links and these will be supported by ParkService. Validating the clinical market is a part of the ParkService project which is essential for the service to be adopted.
The tertiary users are the care-givers and close family and friends of the person with PD. These are the people who can undergo a lot of stress and yet do not receive targeted support services. Since ParkService represents a disease-specific easy way to network and exchange information, it is of benefit to all persons affected and isolated by this disease.
ParkService exists as a prototype service which needs modification before it can be meaningfully validated via pilot sites. However, the technical infrastructure remains unchanged. By exploiting commonly available xDSL internet connections, televisions and remote controls and adding only “ParkLine” (a customised Windows Media Center) the person with PD and their carers at home are connected to the ParkService server.
Through this linkage they can connect either with other people with PD at home or with their clinician. The server is a dedicated Windows Media Server which securely controls access to and delivers stored content. For example, the server may stream video messages from the person with PD to ParkService users they have identified as permitted to see this message and secure this using Microsoft’s Digital Rights Management.
The ParkLine home user-interface is designed for display on television and for access via remote control.
Clinical users can browse messages from the people with PD they support using a browser and therefore experience no set up or maintenance costs.
The handling of video is of particularly importance to the person with PD, since it is by experimenting with different videos that the user identifies the visual cues that they most respond to. This is the first step to configuring INDIGO, the wearable walking aid, to the individual’s disease. INDIGO consists of a pair of virtual reality glasses, available with clear or tinted glass, which project a video image into the user’s peripheral visual field. Once the primary user has identified a video of visual cues (or a short list of visual cues) to which they believe they will be responsive, these can be loaded into INDIGO and the user can experiment with unfreezing or walking.
PD is a global disease and in Europe is marked by lack of neurologists and social isolation of all those affected. ParkService will be validated by pilot sites in Germany, Italy and the UK. The UK pilot site will be purely clinical and therefore we anticipate UK neurologists streaming video from e.g. German people with PD. We shall therefore challenge the service with a realistic trans-European scenario.
The market analysis will be less global in the sense that health markets are still largely defined by the national characteristics of how health services are funded and the role of private clinics or insurance. This area of ParkService is therefore expected to break up into an analysis of separate national markets and then a search for common themes and strategies. One anticipated trans-European result however is that the adoption of ParkService by the clinical community will be prerequisite to its roll-out and in this area a trans-European business strategy is more likely since the European research community is well networked.
Relation with other EC policies
ParkService is in line with many relevant EU policies, such as the European Union Disability Strategy and more specifically the eAccessibility for All directive.
Additionally, making sure that these services are available over different terminals such as TV sets is crucial to ensuring the inclusion of all citizens.
People with Parkinsons’s disease (PD) are typically elderly, disabled and late adopters of new technology (if it is adopted at all). They are also typically isolated and frustrated by lack of access to clinicians and to other people in a similar position. (The same can often be said for their carers.) However, all tend to use their televisions on a daily basis.
Through the familiar medium of television, and with no required knowledge of broadband or obvious presence of a computer, disabled users and their carers can nonetheless simply and securely exchange messages with each other and with their clinicians.
Furthermore, a particular benefit in breaking down social exclusion is the enormous increase in mobility and quality of life available to some PD users through the INDIGO walking aid, whose use is supported as part of ParkService.
Progress and results
For the deployment process, the market validation phase will address the critical issues as to whether the service is sufficiently user friendly for the primary users. These are people with PD who typically have physical disabilities, are elderly and may not be well motivated to try new technology. Cross-border issues will also need to be addressed and clearly providing a service in the home language of the user is mandatory.
Furthermore, in order to market the service, we expect that credibility with clinicians and health insurers will also be needed. This is to be addressed through the pilot sites, trials and dissemination activities.
If these barriers can be overcome the deployment potential is huge. The market is large (>1M users) and the potential improvements in quality of life very significant. The ParkService project will end at the beginning of 2007 and it is expected that the major obstacles will have been identified, strategies put in place to address them and in some cases the obstacles will have been removed.
Reports to be available on the Website
All public reports will be available at the project web site: http://www.parkservice.biz/ These will include the interim and final reports on service customisation and pilot site trials and the project final report. Additionally, all marketing material will be downloadable from the web site.