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Connectedhealth'2018

In Boston in October it is cold, but there is a warm atmosphere and beautiful blue skies by the sea, which is just what we need to make our participation in the Panel to which Personal Healt

It's cold in Boston in October, but there is a warm atmosphere and beautiful blue skies by the sea, which is just what we need to make our participation in the Panel that Personal Health Alliance invited us to moderate a success: the opportunity in rare and complex diseases at the Connected Health Conference, from October 17 to 19, 2018 in this beautiful city.

I met new faces, established faces and young entrepreneurs, as well as senior CEOs, and had the opportunity to compare our own work in digital health, HappyAir Ecosystem, with other digital initiatives in Europe and the rest of the world.

Jim Cavan of @Backpack Health and Mike Weamer of the @Marfan Foundation have successfully teamed up to collaborate on rare disease research, making incredible progress, with hundreds of countries coming together to sign up and participate in this initiative and already they are saving lives, simply by allowing access to relevant clinical data, in an emergency situation.

We are aware that we need to create very large joins to make Artificial Intelligence effective when applied to data sets, to help investigate and identify trends or patterns in the data that could lead to new treatments, interventions or therapies to be developed. .

I met the CEO of @Medpad a few years ago in the UK, they have now moved on and acquired an IT company in Silicon Valley. Its CEO in the US, Alex Kaveh Senemar, also shared his experience: he mentioned, for example, the incompatibility between health systems and their electronic devices. Registries remain a barrier to “seamless integration” as data sharing across different health centers, and thus for better disease research and deeper insight, remains an issue.

We all agreed that we now have many great technology solutions available and under development, but still underutilized by citizens and healthcare professionals. Mainly because we are unable to implement or change the pathways of their health care systems, the way we are managed as patients.

Our systems are too fragmented, even when there are benefits to changing the way a patient is managed, particularly with chronic or rare diseases. Derek Cothran of @EnvoyHealth recognizes that digital health resources - when citizens engage and share across platforms - can help us bring all parties together, much more easily: industry, researchers, health professionals and patients, to achieve better results for all .

Strong partnerships to create change and secure funding are also essential for continuity and sustainability. Building these relationships in associations of patient organizations with the participation of the doctor and the industry is vital, so that we can share relevant data and learn as citizens to maintain a different dialogue with our doctor or specialist, so that they can make decisions based on digitally documented information.

We discussed Cambridge Analytics and current concerns about data storming, both from Tech Giants and public institutions struggling with compliance: the data has made us reticent to some degree about what we're sharing, who's doing what, and where we should share our information.

How do we deal with this?

Being better informed about what organizations are doing with our data is essential, as is questioning our role and identifying our opportunities as patient organisations, in our responsibility to represent the interests of people in the management of our own sensitive data.

It is necessary to know the exchange mechanisms to support better care and to be able to advance research with the experience of the digital, BioTech or pharmaceutical industry and scientific and clinical participation, as well as to determine how much we want to get involved in these processes that are already transforming our future medical care and therapies.

The challenge is also learning to manage our health in the digital age to take advantage of these opportunities. However, we must understand how to work with organizations and people, who are involved with IT, data protection and who provide valid and clinically validated solutions.

Shane Fitch