Dr John Dinsmore from Trinity College, Dublin is heading up a €5 million European science project and he owes it all to his Granny. Growing up in Warrenpoint in Northern Ireland, he was keenly aware that his grandmother, Maureen, who developed MS in her late twenties had no access to services and support (outside the community GP) to help improve her knowledge and ability to self-manage and learn more about the progression of the disease. While the family were a strong and dedicated form of support, improved access to knowledge and services available to support Maureen would have helped greatly over the years.
Once when visiting his grandmother he asked her, how she coped with not being able to walk? ‘John, you know, the bottom line is that in my head, I can run’. Dr Dinsmore developed his interest in health psychology and chronic health conditions from there. He firmly believes that ‘people should have the ability to live at home for as long as they want and to be given the tools that will enable them to do that. I also believe that people should have access or more access to their health data and that by giving them this, they can make better informed decisions. People should be empowered to look after their own health. They can only do this if they proactively engage with managing their own health conditions’.
ProACT, his new research project aims to develop a digital solution that will allow people over 65 who have a number of chronic health conditions to stay longer in their own homes. The idea is that they will use a programming app on their Smart phones, tablets or computers to input data about their health. They with the support of their own network of doctors, carers, family and friends, are then more proactive in managing their health issues.
Dr Dinsmore acknowledges that this is a two way street. ‘You know, one of the challenges is that we get the health professionals in the trial to trust their patients to not only input the data correctly, but also digest the data and act on what it finds’. What Dr Dinsmore would like to see is patients being more involved by taking their own readings such as: heart rate; blood pressure; physical activity. Dr Dinsmore admits that we are still at the beginning of this process but the rapid improvement in digital technology means this is the right time for this type of innovation.
ProACT, has started trials in Louth with one of its trial partners, Our Lady of Lourdes Hospital, as well as a parallel trial in Belgium. Sixty patients will be selected who have one or more of the following chronic conditions: diabetes; chronic heart disease; congestive heart failure; chronic obstructive pulmonary disease (COPD) and age related cognitive decline. They will record their own health data in the trial, which will input into the larger research programme. If necessary, help will be given in terms of using digital technology but Dr Dinsmore has been struck by how much access the over 65s already have to new technology.
In his time as a health psychologist, he has been very aware that patients often see what happens to them medically as outside their ability to change. Recording what they do every day means that over time they can track their condition noting improvements and directly relating it back to their behaviour. ‘You have to facilitate those changes in people so you get a behaviour change, the data is one of the key things we’re looking at to help change’.
Interestingly, Dr Dinsmore rates social connectedness as extremely significant in helping people manage ongoing health conditions. In his previous work, he noted the importance of having a peer group of people who understand the disease and who can lend support and advice, ‘a lot of the people seemed to be more looking forwards to meeting their peers rather than their GPs’. He points to the work of volunteers such as Betty Sutton and Michael McGloin who organised exercise classes and support sessions for people with COPD in Bray and Sligo respectively. Work such as this suggested the idea including social connectedness in ProACT, indeed outcomes from, ‘a lot of those little small projects led to ProACT … there was a hunger for a lot of people to stay well’.
One of the issues where he hopes that ProACT can make a big difference is in the area of polypharmacy. This medical term can happen when people with more than one chronic disease are trying to treat them all at the same time using various medications. ‘Our health system is built primarily on the idea of a single disease treatment (taking care of one disease at a time), we have very limited knowledge of the care pathways and how best to deal with people who live with multiple diseases’. In Ireland, more than 16,000 people age 65 and over are dealing with more than one chronic health condition.
The final trial will conclude in a rural part of Northern Italy. It is important that the digital solutions arrived and are useable across different languages and social/cultural expectations. Dr Dinsmore accepts that ‘the complexity of the health system and the differences in health systems worldwide along with issues around data protection means that there are many variables before anything can be approved’.
The global population is ageing and there is increasing pressure on the health system here and across Europe. Dr Dinsmore is hopeful that ProACT will reduce the need for visits to doctors’ surgery for example. He states that ‘making more financial resources available to improve proactive patient support for primary care can be politically difficult if it affects other areas such as hospital care. For us to do that we need strong leadership in the HSE to see the vision and to work with us’. He accepts that ‘a cost benefit analysis of the potential’ is needed before it will be accepted and that this must be part of any persuasive argument for ProACT.
The ProACT research programme is due to conclude in 2019 with a potential roll out from 2020. Digital technology is impacting on every aspect of our lives. Health is now in its path. If you would like to know about ProACT please visit their website proact2020.eu
Interview by Maretta Dillon.
