What does Harteraad stand for?
'Harteraad connects, strengthens and represents people with cardiovascular disease. Harteraad is connected to its relations. We know what matters to people living with a cardiovascular disease and what is going on in their lives. We translate this into useful advice and products that can be used in the consultation room, at policy tables and in daily life.'
What does Harteraad hope to get out of the partnership with the DCVA?
'The DCVA is a valuable partnership for introducing our patient perspective into scientific research. This way, research can better meet the wishes of the target group, which aides in successfully bringing the results of research to the market. Moreover, the DCVA inspires to explore and initialize new partnerships.'
'Digitally supported (self) care requires better availability and accessibility of instruments. We see further development of E-health and telemonitoring as critical success factors for acceleration and improvement with which disease burden can be controlled if not reduced. We are convinced that cooperation in the context of the DCVA leadership program, among other things, can strengthen development on these themes.'
What does Harteraad add to the DCVA, why should we be happy that Harteraad is participating? Who ultimately benefits the most?
'Harteraad is developing as a center of expertise that is driven by the experiential expertise of people with cardiovascular disease. By being in constant contact with as many people as possible, we know what's important to them. We like to link that knowledge to the insights of DCVA partners so that together we can come to a more complete picture and better insights. Harteraad does this by converting personal (face to face) and digital contact with our relations into usable data and knowledge. By introducing the perspective of patients, research, outcomes of registrations and care processes can be enriched or improved. This ultimately benefits people with a cardiovascular disease by improving the quality of their lives.'
Question from NHR
How can patient orientation within the DCVA be guaranteed and further developed, so that the most important questions for the patient are answered first? The patient is the owner of his or her own data. At the same time there is a collective interest in analyzing these data and learning from it. With the increasing availability of data; what is Harteraad's vision of the patient's role with regard to his or her own data in relation to the collective interest?
'Experiences of, and data and knowledge about people with cardiovascular disease are the engine behind the work of Harteraad. Harteraad is regarded by its relations as a reliable and independent organization that represents their interests in daily life, in the consultation room and at the policy table. For that reason they share their data, in particular about their quality of life, with Harteraad. Harteraad will be able to link those where useful and necessary for advocacy with data from partners within the DCVA such as the NHR. This concept is currently being developed and we are happy to involve DCVA partners.'
'In addition, we know that patients want to contribute to better care and better treatments by sharing their (anonymous or pseudo-anonymous) data for scientific research. Harteraad can and wants to take a leading role in gaining access to data sources, including through portals. Of course we take a critical look at security and privacy protection and we can always be expected to protect the ownership and property of data.'
'We cordially invite DCVA partners to discuss these developments with Harteraad.'