More and more of us are looking online for information to support our health (see Chris Allen’s work on support in Online Communities). In my research, I have found that the ability to get hold of that information and support, which is personal to you, can make a huge difference to how well you are.
I’m focusing on insulin pumps, which are an alternative means to deliver insulin to people with diabetes – compared to the more traditional multiple daily injections.
Insulin pumps have been developed to help people with Type 1 diabetes manage the condition better; both in terms of their quality of life and by more closely resembling a fully-functioning pancreas.
However, introducing a new health technology to an already difficult to manage condition is not necessarily simple, or easy.
My colleagues and I recently published a paper which describes how we created a model to show how people with diabetes become less dependent on primary care and more able self-managers.
We used maps created by general practice staff to show how their patients progress through the system following diagnosis.
In the current system, once treatment has been decided on, the frequency of appointments decreases and people are expected to self-manage with support from regular review appointments. Seeing the model and talking it through with GPs and others helped us to consider some of the shortfalls in the system.
Professor Anne Rogers explains how weaker social ties play a role in helping people manage a long term illness.
With ever more attention on the NHS and how many nurses and doctors are needed to give people the best care, one part of the health equation is going unnoticed – What attention is being paid to the role of the patient and their extended network of relationships? In early 70s West Coast America a piece of research by Anselm Strauss and colleagues examined a set of questions on ‘self-care’.
By Claire Ballinger and Mark Stafford-Watson – Chairs, Wessex Inclusion in Service Design and Delivery (WISeRD) group
It’s the end of our first year in CLAHRC Wessex, we have been thinking about our progress in involving patients and the public in our work (or PPI as it’s called), and reviewing where our focus should be for the coming year. We have settled on five strategic aims:
Develop our capacity for patient and public involvement (PPI) in research and implementation programmes
Promote our CLAHRC Wessex activities to the wider public (public engagement)
Evolve and measure ways to include patients and the public to identify research priorities
Develop a group of patient and public researchers
Measure the impact of patient and public involvement within CLAHRC Wessex
Living with a serious long-term condition is often hard and complex work. My team and I are interested in finding ways to reduce complexity and lift the burden for people with these conditions, and their families, at end of life.
To help us think about the kind of research questions we should be asking we held a research forum at Freemantle Community Centre in Southampton. We invited people with a range of conditions to join us and to inform our work.
Improving the network of support for people with long term conditions is a more sustainable way to help than appealing to them to change their behaviour. Connections between people often encourage action and the use of the resources around them in a more meaningful way in their everyday lives.
At CLAHRC Wessex our flagship project is the implementation, across the region, of GENIE a web-based tool which is designed to assess and develop the support networks of people with long-term conditions. People can map their support networks and state their preferences and needs in order to link them to local organisations for health and well-being support.
This site promotes independent research by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (CLAHRC) Funding Scheme. The views expressed in this blog are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health