{"id":6652,"date":"2020-04-24T11:55:24","date_gmt":"2020-04-24T09:55:24","guid":{"rendered":"https:\/\/www.cmtc.nl\/genetic-alliance-2017-washington-dc\/"},"modified":"2025-05-14T13:50:23","modified_gmt":"2025-05-14T11:50:23","slug":"genetic-alliance-2017-washington-dc","status":"publish","type":"post","link":"https:\/\/www.cmtc.nl\/en\/blog\/2020\/04\/24\/genetic-alliance-2017-washington-dc\/","title":{"rendered":"Genetic Alliance 2017 \u2013 Washington DC"},"content":{"rendered":"

The Genetic Alliance organization exists 30 years in 2017. This was celebrated with a two-day Conference in Washington DC on 9 and 10 March with about 150 participants.<\/p>\r\n

The theme of the Conference was ‘co-creating a healthy future\u2019.<\/p>\r\n

The beginning of the conference was a bit unusual: after the opening speech by Sharon Terry (President and CEO of Genetic Alliance) everybody could participate in a breathing exercise for 5 minutes. It went really quiet in the room. Then the participants went to work in pairs where one person asked the other a question. The questioner just had to listen to the other person and should not respond. This exercise really made clear how important it is to listen to the other with full attention.<\/p>\r\n

Projects for the improvement of health care in the USA<\/h2>\r\n

A number of speakers presented projects aimed at improving health care in the USA. Their presentations had to inform the public and attract people willing to participate in these projects.<\/p>\r\n

    \r\n
  1. Blinded by stereotypes: focusing on the individual. Adolph Falc\u00f3n (Executive President, National Alliance for Hispanic Health).<\/li>\r\n
  2. Commitment: a national and\/or local approach. Nelissa Creary (Assistant Professor, Department of Health Management and Policy, University of Michigan School of Public Health).<\/li>\r\n
  3. People-centered design in health. Whitney Bowman-Zatzkin (Managing Director, Flip the Clinic).<\/li>\r\n
  4. High touch and\/or high tech. Stephen Downs (Chief Technology and Strategy Officer, Robert Wood Johnson Foundation).<\/li>\r\n
  5. Radical innovation and\/or iterative improvement. Shantanu Gaur (co-founder, Allurion Technologies).<\/li>\r\n<\/ol>\r\n

    The presentations can be found on http:\/\/www.geneticalliance.org\/30anniversary<\/a><\/p>\r\n

    Availability of medical records in the USA<\/h2>\r\n

    After these presentations workstreams (subgroups on the aforementioned projects) were organised in which participants worked on possible solutions. From the workstream ‘people-centred design in health’, it appeared that also in the USA the availability and sharing of medical data is a major problem just like in the Netherlands. The medical records of patients are scattered everywhere and the patient does not have control over his\/her own medical data.<\/p>\r\n

    Performance Francis Collins<\/h2>\r\n\r\n\r\n
    \r\n