“Empowerment through digital tools is still far away from citizens”

Shane Fitch (@belivedomoreis the founder and director of Lovexair, a foundation that supports people affected by chronic and rare respiratory diseases. After ten years of working in digital health she has developed together with a multidisciplinary team, a digital self-care program for all types of respiratory patients.

Fitch is involved in various international networks to help accelerate patient empowerment through digital tools. This month she will be speaking at HIMSS Europe & Health 2.0 Conference with other digital health gurus.

How did you start LovexAir and why?

My son was born with a rare condition 19 years ago, Alpha-1 Antitrypsin Deficiency, so I started finding out about the condition on the internet. In Spain there was a small patient association for Alpha-1 and the founder asked me if I wanted to get involved and take the helm, so I began working with patient organizations and healthcare professionals.

Globally, patients have been demanding more support from healthcare professionals for early diagnosis,  respiratory physiotherapy and chronic-care, so I had the idea of developing a self-care program in digital tools to help them and their healthcare team to connect and provide support.

Our goal was to provide education &  monitoring in self-care, to improve their outcomes and better quality of life. This project was very ambitious 10 years ago, so I realised I had to establish an organization which could build institutional support through collaborative agreements across  jurisdictions and capacity to deploy across partnering networks at low-cost. Hence the Lovexair Foundation.

How is your son doing today?

He is leading a normal life. In fact he is pushing all the boundaries because he is a high level professional surfer, competing internationally and Ambassador for young people #surfandbreathe.

At Lovexair we believe  that everyone should try to live their dream, despite having a chronic or rare disease. That is the message we want to say at Lovexair: get active, learn how to self-manage, be positive and build your confidence, so you can take on challenges and make the most of your life.

Does Lovexair offer help to all type of respiratory patients?

Yes, we do. We are working with prevalent diseases such as asthma, COPD… and also rare diseases. In our advisory board there are clinicians and professionals with great knowledge from diverse areas: IT, public and private healthsector & communications.

Which digital tools does Lovexair offer to patients?

We clinically validated an m-Health model for self-care in respiratory patients: focusing on specific aspects of care management which has been published in various international forums.

Results were very positive in adherence, patient perception and from healthcare teams perspective, so we went into phase II to develop a platform where patients can check their progress in a daily-care program, set their own goals, etc. and professionals can monitor their patients  and prioritise interventions when issues are identified.

We went for a platform instead of an app because it is more versatile and easier to upgrade regularly. We can also build an ecosystem of different connective technologies from other providers in the future, devices or applications which build more value for our user-base.

Is this platform for all types of respiratory patients?

Yes. We have a core-chronic care programme that is useful for all type of respiratory patients  and we work with clinical experts & patients, when we want to bring in additional metrics, for those with specific diseases like Alpha- 1, cystic fibrosis.

Patient-reported outcomes (PROs) are becoming more important to decision-makers, especially to validate evidence on potential new treatments or orphan therapies. Patients understanding and engagement can boost research in the future. Our work is to help citizens understand what these new digital tools mean to their future health and wellbeing.

Which are the gaps between empowered and non-empowered patients?

I think the gap could get wider if we don’t do something about it. We focus too much on the potential of technology such as AI but we miss the fact that people need to understand what they share, with whom and for what purpose to make this work and get people actively engaged.

What happens if a patient does not want to be empowered?

There are many people in life who don’t want to take responsibility, and they prefer the state or a third party to take care of their health. But if you do have any doubts maybe you need to speak out about them and look for the best solution you can find for yourself or a member of your family.

Respiratory patients in a Lovexair workshop.
Respiratory patients in a Lovexair workshop.

That is what I wanted to do for my son. But to do that, I had to make an effort, it’s not always simple for people to be close to the best experts. But I agree, not everyone wants to be empowered and everyone is different and makes their own choice.

You will be speaking at HIMSS Europe & Health 2.0 Conference about how to achieve real patient empowerment. Why would you recommend everybody to attend?

I have been working in patient organizations for 19 years and digital health for about ten and I have seen a pretty spectacular revolution. But I have only found a handful of patients that are leading in innovation. I think empowerment through digital healthcare tools is still far away from citizens, in their daily lives. This session enables anyone who wishes to join in and learn together. We need to translate what is happening and help people see how they can take on this change for better health outcomes.

 

Teresa Bau, Communications Director at Patient Empowerment Foundation.

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