The value of a patient’s friends and family towards their care should not be underestimated, and new social networking technology makes it easier for people to provide support, say Vickie Cammack and Kerry Byrne
Rarely do people face health or care situations where they do not need support from their personal network of family and friends. The importance of these networks to our health, safety and wellbeing cannot be overstated and finding ways for formal health and social care systems to support, draw upon and engage with them is a challenge.
‘We aim to provide a place that makes it easier and less stressful for family and friends to share care and support activities’
Increasingly, individuals and their families turn to online resources and tools as a first stop to finding information about disease, disability, and caring for someone else. Eight in 10 internet users have looked online for health information and half of online health information research is conducted on behalf of someone else.
There are growing numbers of patients and family members who are internet savvy, who are ready to use technology to manage their health and that of family members.
Tyze, in Canada, is one such social venture that uses technology to engage, inform and mobilise online personal networks of care. It is working with UK organisations such as Nesta, Nominet, the Calouste Gulbenkian Foundation, Midland Heart and Camden Council to create networks that include family and friends, and in many cases, formal paid care providers who work together to keep people safely at home.
What does it do?
Tyze is a private social platform consisting of a shared calendar, a messaging system, a “CareWall” where stories and updates can be posted, file storage and sharing capability.
Key to the success of its networks is the capacity to mobilise three aspects of care repeatedly reported as critical by persons managing their own care or the care of a loved one: informational, emotional and practical supports.
‘The economic contributions made by unpaid supporters reach the billions, carers save the UK £119bn annually’
These forms of support are not always considered by formal care systems, which tend to focus on medical aspects of care during an episode of acute need. Yet we know health and care is not experienced in this way by patients and their family members.
Family and friends provide support over the course of health and care challenges, beyond the acute need or moment of crisis. The economic contributions made by unpaid supporters reach the billions. In Canada, conservative estimates sit at $25bn. In the UK, carers involved in supporting others save the country £119bn annually.
We aim to provide a place that makes it easier and less stressful for family and friends to share care and support activities among a group. Using the update, request and calendar features means everyone knows how and when to help.
People are given the opportunity to contribute in the way in which they are best suited. This could mean a neighbour who loves gardening pitches in with outdoor work, while a granddaughter who is internet savvy seeks out the best price for a Zimmer frame. We have seen these kinds of connections and care “shared” by the network supporters time and time again.
Through mixed methods programme of research we have learnt that:
- 81 per cent of supporters report they are now more aware of how they can support someone on the network; and
- 84 per cent report that using our networks has improved quality of life for someone on the network.
People who are facing caring and health challenges experience positive outcomes:
- 82 per cent report that they feel less alone; and
- 86 per cent said people in their life know more about what they can do to support and help them.
Why do networks matter?
Hundreds of studies have established that social support benefits mental and physical health.
‘It can be hard to ask for help and carers or people managing chronic disease can quickly become overwhelmed’
The support and care available from family and friends is associated with improved health outcomes, improved experience of care and cost efficiencies for the system. The health effects of not having a network of supporters are equivalent to smoking 15 cigarettes a day.
Take Margaret, for instance − the primary carer for her elderly husband Alan, who was hospitalised after a sudden decline in health. Margaret still works full time and was offered the use of our network by her employer. She used it to keep her family up to date and her family used it to let her know she was not alone.
“People are always concerned about the patient. It was good to know someone was worrying about me too,” she said.
Her family also used the platform as a place to share information about the best options and needs for post-discharge care such as getting equipment in place at home. It became a place to continue checking in on Alan and Margaret and to offer support.
Another example − Kristina has cancer and uses the site to help keep her friends and family up to date and informed about her progress. Her network comes together to organise lifts to appointments and to arrange homemade meals for her family.
What is the opportunity?
It can be hard to ask for help and carers or people managing chronic disease can quickly become overwhelmed. While the language of independence fills the discourse of health and care system documentation and objectives, we so often draw on support and care from friends and family.
‘Patients and families are online, right now, looking for tools to enable them to engage as partners in care’
Interdependence is the foundation of a network model of care and a good life. Whether it is messages of support received from friends after the birth of a child or coffee with a friend after a tough day at work, throughout our lives we rely on our networks for help.
Patients and families are online, right now, looking for tools to enable them to engage as partners in care. The focus on a network model of care should engage the individual, their support networks and their care providers to co-create the best outcomes.
Offering support at the right time and in the right place is a critical component of quality care. Our networks can be integrated with NHS touch points, where patients and families can connect and create spaces and places to organise and contribute to health and care.