Dr Verónica Soto: innovation and technology lead to tailored care
Chile’s Dr Verónica Soto had a vision for haemophilia care in the country, one that would mean all people with haemophilia had an accurate diagnosis, and received tailored care based on long-term monitoring of their condition and joint status. With the completion of the NNHF Chile 3 project, Dr Soto is part of a network that has brought the country closer to that vision.
Dr Soto, a paediatric haematologist from Santiago’s Hospital Roberto del Rio, began collaborating with NNHF in 2009. This included undertaking the huge task of conducting laboratory assessments of people with haemophilia, alongside an evaluation of the medical knowledge of healthcare professionals and educational materials.
Addressing the challenges
The project team found that many people with haemophilia were not only misdiagnosed from the perspective of their coagulopathy, but also their type of haemophilia. In such cases, any treatment being prescribed would be ineffective.
The team therefore set about creating a national registry to collect the revised data. Alongside this, educational materials were developed for families and healthcare professionals, and healthcare professionals were guided on how to evaluate and monitor their patients and the efficacy of their treatment regimens.
Following this project, the team identified two further opportunities to create change. Firstly, varied standards of multidisciplinary care were resulting in joint damage and disability. Secondly, they felt that moving the registry to an online platform would help overcome the difficulties faced when people with haemophilia transitioned from paediatric to adult care, or if they moved region. An online registry would also be easier to use than an Excel based one and would provide a more efficient way of collecting and maintaining up-to-date national data for advocacy activities.
Monitoring health outcomes through technology
Dr Soto’s follow-up project therefore involved building up a team to utilise technology to create an innovative approach to care delivery and management. Two of the key outcomes from this project are a mobile app and an online registry.
The mobile phone app focuses on musculoskeletal (MSK) health, prescribing balanced based exercises as a form treatment. The app rates the users’ performance as they undertake these exercises, so that their physiotherapist can then adapt the exercise programme accordingly, without having to wait until the monthly consultation.
The app is already producing positive results. Jaime Ricardo Tapia, who has severe haemophilia A, has been using it for 11 weeks: “It has helped me to be more rigorous when it comes to doing the exercises…It also helps me to want to improve more every time, and you know instantly if you are not doing the exercise well” he explained.
The user-friendly online registry that was created will, alongside the mobile phone app, help track arthropathy and joint health, so that care and treatment which help prevent MSK complications can be prescribed. The development of the registry and the mobile app also serves as a stepping stone for the development of future complementary tools, as further needs of healthcare professionals and people with haemophilia are identified.
Dr Soto worked closely with Dr Juan Cristobal Morales from Hospital Sotero del Río to develop the registry. As a family doctor working with adults, Dr Morales’s experience complemented that of Dr Soto’s paediatric haematology background; “He was able to provide a different perspective, so we’ve been able to come to agreements and organise all issues as they are most relevant to patients as a whole. Which is why it’s so important to work with individuals who have a different viewpoint than your own” explains Dr Soto.
Accurate data leading to tailored care
The online registry is now being rolled out across Chile, with 34 centres aiming to use it from early 2020. Once implemented, people living with haemophilia will receive care and treatment that is tailored to their individual needs, whilst the medical community will have long-term data that will ensure they and government authorities acquire the appropriate resources required for effective haemophilia care. The registry was developed with a view to being utilised not just across Chile, but potentially the whole region. “Indeed, if as a country, or as a Latin American region, we could establish the same registry everywhere, this would be a tremendous achievement,” concludes Dr Soto.
Award winning innovation and collaboration
The innovative and collaborative approach taken by the team has resulted in their Chile 3 project being named the NNHF Project of the Year 2020. This award goes to the project which has demonstrated outstanding dedication, excellent project management, stakeholder involvement and sustainable impact.