On November 15, 2018 I visited the third European Patients Innovation Summit. Novartis sponsored the summit and 14 locations met simultaneously and over 350 delegates attended representing many chronic diseases. I was at the Irish hub hosted by Facebook in their Dublin Offices. The Chairperson of the Summit was Neil Johnson who is the CEO of Croi (Croi), the Heart Disease and Stroke representative organisation in Ireland.
The diseases addressed in Ireland were Cystic Fibrosis, Epilepsy, Migraine, Multiple Sclerosis, Heart & Stroke and Meningitis. Everyone either had the disease or was representing a chronic disease. I have noticed that there is a groundswell of support for patient led development for new medicines and technology to aid these conditions.
The main speakers addressed the following questions:
- Harnessing the power and potential of digital technologies to empower patients with chronic conditions: How evidence-based digital interventions can improve health outcomes for patients.
- Supporting the adoption of impactful digital technologies: opportunities and challenges for patient groups.
At the Dublin hub we also had Patrick Slevin speaking about Digital Health for Self-Management: A Study of COPD Patient Perceptions, Mary Fitzsimons about National Epilepsy eHealth Programme and Philip Watt about The use of Digital in Cystic Fibrosis Ireland.
From the remote hubs we listened to speakers about the two main questions. Between listening to the speakers we also had breakout groups that permitted us to discuss what we had heard and to put it into a local context. These discussions were uplifting and swiftly targeted the areas of express concern of the group.
They shared these local observations with the other hubs, and we created action points on how we should move forward, as patients. The committee will collate these and a white paper will be prepared.
In this post I would like to share the points I felt had the most immediate impact.
Before the Meeting
To prepare I requested comments or observations on Twitter and Facebook. It surprised me that there was complete silence, except for Laura Kolaczkowski of iConquerMS, and we discussed electronic data, and who owns it, and who can use it. The other hubs raised this topic.
Mary Fitzsimons who works with the RCSI (Royal College of Surgeons of Ireland) shared the story of how the Epilepsy Association of Ireland (EAI) has implemented an electronic patient record (EPR). In Ireland all the patient records are in a paper format. There are separate and distinct electronic records kept by various medical professionals, but no connection exists between them.
The EAI designed a system accessible by all parts of the medical system, from the patient to the doctor, and all the services in between. This system has helped to improve the lives of people with epilepsy. In this YouTube clip they share about this program.
My Thoughts: I am so excited that they have developed this and that every part of the medical team interacts with this one interface. They should use the lessons learned to create a common application that everyone can use. It is disappointing that this still is not implemented in Ireland.
Patrick is an anthropologist, and he spends his time talking with people. A recent study he conducted with people with COPD and how they use technology highlighted a major flaw in the apps. The application developers did not have the users, the people who have COPD, involved at the outset of the design. This error, he has found, occurs often. They consult the user, the patient at a later stage of the process, after all the frameworks are built.
In his talks with the users they did not see how the apps could help them, or even how to use them. Many people with COPD are older, and understanding the technology, and how to use it, would require significant training, that is not offered.
His wish is that technology developers should have the patient involved from the beginning. This will ensure that the application is relevant, and usable, by the person with the chronic disease.
My Thoughts: This was a very interesting talk, and it surprised me that developers as a part of their process don’t include the people with the illness at the start, helping to create.
Phillip is the CEO of Cystic Fibrosis Ireland and he shared with us the role that technology plays is spreading the message of this illness in Ireland. By utilising these resources they have been able to educate the public about the illness, which is crucial to helping people who have the disease and also helps to fundraise.
He also shared how technology has enabled the members of the society, by creating online groups of people with Cystic Fibrosis. Meeting other people with CF is difficult because of the risk of infection. This has allowed the sharing of experiences in a safe environment and has reduced the isolation that comes with the disease.
My Thoughts: By using technology to create safe environments for the community the Cystic Fibrosis Association of Ireland has improved the lives of its members. This model of community can strengthen the voices of each member and will also allow innovation to come from within the community.
Immediate Action – Ireland
They acknowledge technology to be a method that will enhance the lives of people with chronic illnesses. It will achieve this through the use of electronic measuring tools, applications on our phones and the development of an Electronic Patient Record.
The group was very impressed with the development of an EPR for people with epilepsy. They felt it that this model, which they have implemented which should be copied and used for all patients. One attendee mentioned that they have to repeat the medical history of their child to every new medic they see. The risk of this is that a crucial element of the history could be omitted which could have a material impact on the treatment of their child. If the EPR was available, then this potential risk would not happen.
It is the intention of the group to start a single cause groups whose sole focus will be the implementation of an EPR in Ireland. When the group is created, and is successful in achieving this singular goal it would be fantastic.
This was my first time attending this summit, and the sense of community very encouraged me across Europe. Although we are separate nations, we all have chronic illness communities that have similar needs. When these align the strength of the group should make the achievement of these goals a reality. By having the patient driving the innovation it will ensure they target innovation in the areas of deepest need.
It also strengthened me in my resolve to take a greater role in advocacy for the chronic illness community. It is important that we speak out, and that they hear us. These are exciting times and technology is enabling this community to work together to achieve far more than we could as individuals.
Robert Joyce is a blogger from Ireland. Take a look at his blog, “A 30 Minute Life” (www.a30minutelife.com). He has been living with MS for over 26 years and shares his journey with this illness and chronic pain on his blog. He is active on Twitter and Facebook.
Disclaimer: Robert’s attendance at the summit was sponsored by Novartis.