Going virtual to support the haemophilia community at home
How can we help people with haemophilia to better cope with staying home? What tools or activities can be supported remotely? Can going virtual with multidisciplinary training enable us to reach more people?
These are some of the questions that the team working on Mexico’s fourth project supported by the Novo Nordisk Haemophilia Foundation asked themselves when faced with the uncertainty of the COVID-19 pandemic. By quickly adapting their approach, they were able to meet the needs of their community while never losing sight of their capacity-building objectives.
Adapting in the face of uncertainty
Minerva Cruz is familiar with uncertainty. When her son was first diagnosed as an infant with moderate haemophilia B, the family, which had no history of bleeding disorders, weren’t sure if the diagnosis was correct. At the age of four, more tests were run and her son was ultimately diagnosed with severe haemophilia A.
“I became involved with the haemophilia association in the State of Mexico to learn more about my son’s condition and care for him properly. My commitment evolved from wanting to learn about the disease as a mother, to studying nursing and coagulopathies,” explains Ms Cruz, who is currently president of the Federación de Hemofilia de la República Mexicana (FHRM). “Now, my mission is to help ensure that people with bleeding disorders and their families can enjoy a full life without having to face the limitations we had in the past.”
In 2020, the project team decided that going virtual was the best way to achieve their goals while supporting the community throughout the pandemic. World Haemophilia Day was held online as a virtual event and they quickly organised training sessions using Facebook live, reaching more than 200 people. Knowing that access to the online world could be a lifeline for those sheltering at home, they were able to assist members in difficulty with internet connections.
Supporting rehabilitation at home
Seeing the need for home care, the project team developed a plan to allow virtual rehabilitation for people with haemophilia and assisted the most vulnerable with equipment to facilitate participation in online sessions. They were also able to move ahead with the launch of a national online patient registry and organise advocacy meetings with health authorities.
“With people afraid to go to hospitals due to the risk of contagion, virtual sessions provide a way of keeping the contact with our community while opening access to information for more people,” explains Ms Cruz. “Setting up our online patient registry enables them to register their bleeds and treatment infusions, which is important now that they have limited opportunities for in-person consultations.”
In the second half of the year, the project team held 16 virtual training sessions for people with haemophilia, two virtual online training sessions at national level for healthcare professionals (HCPs), as well as two virtual sessions for HCPs on the use of the online registry. Going forward, data from the registry will provide a valuable tool for the patient organisation as they continue to advocate for improved care and treatment of haemophilia and allied bleeding disorders in Mexico.