Valid Video URLS
|Hosting Website||Accepted URL format|
Your video should be public for us to be able to embed it.
Your video should not be private for us to be able to embed it.
|Myspace Video||sample url: http://www.myspace.com/520090747/videos/video/107696011|
The mission for Holding onto JOY was focused on the simple fact that we all eventually die; how can we support people, the families, caregivers and clinicians during a non-curable illness or a terminal illness?
These are two different groups of patients since not every non-curable condition is necessarily terminal. Long term conditions include a broad spectrum of health issues including Chronic Obstructive Pulmonary Disease (Asthma, bronchitis and other respiratory illnesses come into that group); heart disease; neurological illnesses and may be combined with mental ill health, physical disability or learning disabilities to produce complex co-morbidities as the person ages. More recently HIV/AIDS and other communicable diseases can be added to those LTCs since increasingly comprehensive treatments can prevent premature death although a cure is not yet identified.
However in both cases the answer is we can support these patients with palliative care.
What is Palliative Care?
Palliative care (from the Latin ‘palliare’: to cloak) focuses on the relief of pain and other symptoms and problems experienced in serious illness. The goal of palliative care is to improve quality of life, by increasing comfort, promoting dignity and providing a support system to the person who is ill and those close to them.
Palliative care is appropriate for anyone of any age who is facing serious illness. It can be delivered alongside active treatments designed to try to prolong life at an early point in the disease process. It is also applicable at the end of life and into bereavement
Palliative care neither hastens nor prolongs death. It celebrates life, even when time is limited. It regards dying as a normal process.
Defining the Unmet Need in Palliative Care
Many health innovations are targeted towards prolonging life and the aspiration for immortality – but at what cost to quality of life? Our starting point was to ask “What are attitudes to palliative care around the world?” and the answer is it is very variable:
- UK, USA, Canada, New Zealand, Australia, Western Europe – mainly offer palliative care services as part of their mainstream healthcare – some of that is funded nationally, some through insurance or pay per use. A recent study in the UK stated that 60-82% of people who die need palliative care.
- Africa, Asia and South America as well as Eastern Europe show a much more varied status; some at the start of capacity building, some with services in large urban areas but little in rural parts and some countries where the concept of palliative care is not formally recognised and in fact is almost a taboo.
What can mHealth offer in palliative care? We believe it can offer an holistic set of supports spread across the 8 domains of care, allowing better informed patients and caregivers to share the burden of palliative care without overly intrusive stays in hospital, hospice or visits at home.
Many of these functions or Apps already exist in either a suitable form or one that we could adapt/connect with. For example Grid Player comes with a web based interface which allows customised keyboards to be created along with culturally adapted speech and language supports.
What we are seeking to do is join existing products together where practicable and then innovate the umbrella to hold them all in place. We decided not to focus on an SMS only product since there are no consistent milestones during palliative care to trigger sending messages (like there would be in say a pregnancy). Because we have global ambitions we would be looking at Open Platform and a webapp rather than a OS specific mobile App initially.
Click on each of the Business Model Canvas images to open a PDF document
Having drafted the Business Model Canvas we faced a dilemma; we have ambitious global reach in mind but each region is at a different place in capacity building. How do we create a test of the market? The options we discussed were:
To test one segment of the innovation with a group of people and then build on that
- We are creating an holistic support – to test out just one element of the 8 domains of care would not tell us much more than the existing app availability does; our testing would be inconclusive until we had a complete innovation to test on the same group. This risks pilotitis and not being able to then roll the innovation out into culturally diverse regions
Develop the innovation for just one country which is actively building capacity on an existing palliative care foundation and then roll it out from there.
- During this period the countries which have not yet started capacity building could be running awareness raising campaigns and studying how best to start capacity building. There is still a risk of pilotits and additionally a risk of trying to eat the elephant in big chunks and getting indigestion. Further there is a risk that investors will consider this too risky and want to see the much smaller and tighter testing defined above.
We are going to stick our necks out and go with option 2 simply because option 1 does not provide any concrete evidence that this innovation is going to be of benefit. To illustrate how this may breakdown here are three simple BMCs for regionalised testing and roll out of the innovation:
- Established palliative care clinics in cities; availability of specialist training for clinical staff
- Aga Khan Development Network
- Family approaches to sick and dying ; plus culture of raising funds through donations
- Clinical staff respect family involvement in care of the sick
- Nokia Life+ already delivering mLiteracy
- New methods of financing healthcare starting to appear including health insurance and especially employee benefits
A small Focus Groups was undertaken by a member of the team in Pakistan and the report is attached in discussions or can be accessed here.
This does not mean that in other regions nothing would be progressed during the innovation development in Pakistan; work could be started on two specific aspects in other regions:
In countries like Nigeria, Egypt and Greece palliative care is not established as a concept; preliminary work could go into addressing that with some awareness raising activity and with some staff training. Unless there is a palliative care clinical pathway mHealth will be a incomplete solution but may be better than no support at all. We did find a nice example of awareness raising which is available in several formats in both Arabic and English. It does not rely on literacy because it can be spoken and it incorporates a little interactive quiz. Something like this could be readily adapted to mHealth.
Why not start with countries which already have well established palliative care programmes? Well for exactly that reason – people are currently well served and although our innovation can extend the reach of those services to more hospice at home provision we would not learn as much about the holistic approach since the clinical staff would be more likely to pick and choose rather than referring for the whole package.
However, a critical component in the long term will be the interoperability to connect the mHealth with monitors and sensors (eg Google Glass, vital signs monitors, diabetes sensors) and other assistive technologies such as environmental controls. This interoperability can be developed within the current hospice and palliative care provision in those well established countries. Examples include ActivPal (physiotherapy movement monitor); Telecare and Telehealth; the Touch-iT alert; a wrist worn epilepsy sensor Epi-care Free; or to assist with mobility a door opener Doormatic.
In conclusion there is a repidly growing need for the provision of palliative care around the world. Current mainstream health provision cannot meet this need with traditional hospice approaches. mHealth embraces co-production, capacity building and offers patients the chance to live the life they want, where they choose and supported by the caregivers they prefer but in the knowledge that they can make informed choices because they have an mHospice in their pocket. Providing the cultural and language variations are planned for and a statified approach taken as shown in the three sub Business Model Camvases it is possible to address this on a global level bringing important and measurable benefits to millions.
mHeath Projects Map
Talking About Death
Why does traditional palliative care not always deliver?
Socio-economic impact of mHealth