HHDC – Holland Health Data Cooperative

[fusion_builder_container admin_label=”doel” hundred_percent=”no” hundred_percent_height=”no” hundred_percent_height_scroll=”no” hundred_percent_height_center_content=”yes” equal_height_columns=”no” menu_anchor=”doel” hide_on_mobile=”no” class=”” id=”” background_color=”#f0f0f0″ background_image=”” background_position=”center bottom” background_repeat=”repeat-x” fade=”no” background_parallax=”none” enable_mobile=”no” parallax_speed=”0.3″ video_mp4=”” video_webm=”” video_ogv=”” video_url=”” video_aspect_ratio=”16:9″ video_loop=”yes” video_mute=”yes” video_preview_image=”” border_size=”0px” border_color=”” border_style=”solid” margin_top=”” margin_bottom=”” padding_top=”110px” padding_right=”” padding_bottom=”60px” padding_left=”” admin_toggled=”yes”][fusion_builder_row][fusion_builder_column type=”1_1″ layout=”1_1″ background_position=”left top” background_color=”” border_size=”” border_color=”” border_style=”solid” spacing=”yes” background_image=”” background_repeat=”no-repeat” padding_top=”” padding_right=”” padding_bottom=”” padding_left=”” margin_top=”0px” margin_bottom=”0px” class=”” id=”” animation_type=”” animation_speed=”0.3″ animation_direction=”left” hide_on_mobile=”no” center_content=”no” min_height=”none” last=”no” hover_type=”none” link=”” border_position=”all”][fusion_title margin_top=”0px” margin_bottom=”20px” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” size=”1″ content_align=”center” style_type=”none” sep_color=””]

DOEL VAN Holland Health Data Coöperatie

De opbrengst wordt geherinvesteerd in een nieuwe gezondheidseconomie: een economie die belang heeft bij jouw gezondheid in plaats van bij jouw ziekte

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Gezond AKKOORD: coöperatief beheer van je gezondheidsgegevens

De Holland Health Data Coöperatie werkt momenteel een module uit waarmee je eenvoudig je voorkeuren voor het delen van je gezondheidsdata ten behoeve van onderzoek kunt bepalen. Zo blijf je als burger de baas. Lees hier meer

[/fusion_title][fusion_separator style_type=”default” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”#e0e0e0″ top_margin=”20px” bottom_margin=”40px” border_size=”1px” icon=”” icon_circle=”” icon_circle_color=”” width=”40%” alignment=”center” /][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container][fusion_builder_container admin_label=”principes” hundred_percent=”no” hundred_percent_height=”no” hundred_percent_height_scroll=”no” hundred_percent_height_center_content=”yes” equal_height_columns=”no” menu_anchor=”principes” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”center center” background_repeat=”no-repeat” fade=”no” background_parallax=”none” enable_mobile=”no” parallax_speed=”0.3″ video_mp4=”” video_webm=”” video_ogv=”” video_url=”” video_aspect_ratio=”16:9″ video_loop=”yes” video_mute=”yes” video_preview_image=”” border_size=”” border_color=”” border_style=”solid” margin_top=”” margin_bottom=”” padding_top=”60px” padding_right=”” padding_bottom=”” padding_left=”” admin_toggled=”yes”][fusion_builder_row][fusion_builder_column type=”1_1″ layout=”1_1″ spacing=”yes” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”no” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”0″ border_color=”” border_style=”solid” border_position=”all” padding_top=”” padding_right=”” padding_bottom=”” padding_left=”” margin_top=”” margin_bottom=”” animation_type=”slide” animation_direction=”left” animation_speed=”1.0″ animation_offset=”top-into-view” last=”no”][fusion_title margin_top=”0px” margin_bottom=”20px” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” size=”1″ content_align=”center” style_type=”none” sep_color=””]PRINCIPES[/fusion_title][fusion_separator style_type=”default” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”#e0e0e0″ top_margin=”20px” bottom_margin=”40px” border_size=”1px” icon=”” icon_circle=”” icon_circle_color=”” width=”40%” alignment=”center” /][fusion_content_boxes layout=”icon-with-title” columns=”2″ title_size=”24px” title_color=”#ffffff” body_color=”#ffffff” backgroundcolor=”#619e85″ icon=”” iconflip=”” iconrotate=”” iconspin=”no” iconcolor=”#ffffff” icon_circle=”no” icon_circle_radius=”0px” circlecolor=”transparent” circlebordersize=”0px” circlebordercolor=”transparent” outercirclebordersize=”20px” outercirclebordercolor=”transparent” icon_size=”38px” icon_hover_type=”fade” hover_accent_color=”#ffffff” image=”” image_width=”” image_height=”” link_type=”” link_area=”” link_target=”” icon_align=”left” animation_type=”fade” animation_delay=”” animation_offset=”top-into-view” animation_direction=”static” animation_speed=”0.6″ margin_top=”” margin_bottom=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=””][fusion_content_box title=”Van de burger” backgroundcolor=”#619e85″ icon=”fa-user” iconflip=”” iconrotate=”” iconspin=”no” iconcolor=”#5c5c5c” circlecolor=”” circlebordersize=”” circlebordercolor=”” outercirclebordersize=”” outercirclebordercolor=”” image=”” image_width=”35″ image_height=”35″ link=”” linktext=”” link_target=”_self” animation_type=”” animation_direction=”static” animation_speed=”0.3″ animation_offset=””]

De coöperatie is van de leden, en niet van Amazon of Google. De leden bepalen wat er met hun data gebeurd. Burgers – ziek en gezond – horen de vruchten te plukken van de data economie, in plaats van afhankelijk gemaakt te worden van de grote spelers.

[/fusion_content_box][fusion_content_box title=”Veilig” backgroundcolor=”#619e85″ icon=”fa-lock” iconflip=”” iconrotate=”” iconspin=”no” iconcolor=”#5c5c5c” circlecolor=”” circlebordersize=”” circlebordercolor=”” outercirclebordersize=”” outercirclebordercolor=”” image=”” image_width=”35″ image_height=”35″ link=”” linktext=”” link_target=”_self” animation_type=”” animation_direction=”static” animation_speed=”0.3″ animation_offset=””]

Data worden veilig bewaard, en alleen versleuteld en na jouw toestemming daarvoor, vrijgegeven voor gebruik door derden.

[/fusion_content_box][fusion_content_box title=”Transparant” backgroundcolor=”#619e85″ icon=”fa-bullhorn” iconflip=”” iconrotate=”” iconspin=”no” iconcolor=”#5c5c5c” circlecolor=”” circlebordersize=”” circlebordercolor=”” outercirclebordersize=”” outercirclebordercolor=”” image=”” image_width=”35″ image_height=”35″ link=”” linktext=”” link_target=”_self” animation_type=”” animation_direction=”static” animation_speed=”0.3″ animation_offset=””]De werkwijze van de coöperatie is controleerbaar. Verzoeken voor data gebruik worden eerst beoordeeld door de Beoordelings Commissie Ethisch Datagebruik. Als die concludeert dat er garanties zijn waardoor de data niet verhandeld noch op andere manier vrijgegeven worden, en alleen benut voor het doel van de aanvraag, geeft de Commissie een positief oordeel. Het is vervolgens aan de leden om dat positieve oordeel te volgen of toch niet.[/fusion_content_box][fusion_content_box title=”Not-for-profit” backgroundcolor=”#619e85″ icon=”fa-database” iconflip=”” iconrotate=”” iconspin=”no” iconcolor=”#5c5c5c” circlecolor=”” circlebordersize=”” circlebordercolor=”” outercirclebordersize=”” outercirclebordercolor=”” image=”” image_width=”35″ image_height=”35″ link=”” linktext=”” link_target=”_self” animation_type=”” animation_direction=”static” animation_speed=”0.3″ animation_offset=””]

De coöperatie heeft geen winstoogmerk. De coöperatie wil juist de opbrengst herinvesteren in biomedisch onderzoek dat de coöperatie – haar leden – belangrijk vinden. Of in andere zaken die de coöperatie belangrijk vindt en die een gezonde samenleving stimuleren. In preventie bijvoorbeeld.

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De Holland Health Data Coöperatie kent een bestuur, waarin mensen op persoonlijke titel zitten. Zij vertegenwoordigen dus niet de organisaties waar zij werkzaam zijn.
De HHDC kent een Beoordelings Commissie Ethisch Datagebruik. De commissie beoordeelt alle aanvragen voor datagebruik van derden. De bezetting van deze Commissie is nog niet vastgesteld.

De HHDC wordt met kennis, netwerk en middelen ondersteund vanuit een aantal organisaties die tezamen de weg hebben bereid voor het ontstaan van de HHDC. Zie ondersteuningsteam en founding parents.

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BESTUUR

[/fusion_title][fusion_separator style_type=”single” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” sep_color=”#386955″ top_margin=”30px” bottom_margin=”60px” border_size=”1px” width=”40%” alignment=”center” /][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container][fusion_builder_container hundred_percent=”no” hundred_percent_height=”no” hundred_percent_height_scroll=”no” hundred_percent_height_center_content=”yes” equal_height_columns=”yes” menu_anchor=”” hide_on_mobile=”small-visibility” class=”” id=”” background_color=”#619e85″ background_image=”” background_position=”center center” background_repeat=”no-repeat” fade=”no” background_parallax=”none” enable_mobile=”no” parallax_speed=”0.3″ video_mp4=”” video_webm=”” video_ogv=”” video_url=”” video_aspect_ratio=”16:9″ video_loop=”yes” video_mute=”yes” video_preview_image=”” border_size=”” border_color=”” border_style=”solid” margin_top=”” margin_bottom=”” padding_top=”” padding_right=”” padding_bottom=”60px” padding_left=”” admin_label=”profiel mobiel” admin_toggled=”yes”][fusion_builder_row][fusion_builder_column type=”1_3″ layout=”1_3″ spacing=”” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”#77b49b” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”0″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”20px” padding_right=”20px” padding_bottom=”20px” padding_left=”20px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_person name=”Gaston Remmers” title=”Voorzitter” picture=”http://hhdc.nl/wp-content/uploads/2018/04/Gaston-Remmers-detail-255×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=””]Gaston Remmers (1965) is a professional with over 30 years of experience in designing and managing complex multistakeholder projects and programs, in The Netherlands and abroad.[/fusion_person][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”remmers” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”custom” button_gradient_top_color=”#619e85″ button_gradient_bottom_color=”#619e85″ button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][/fusion_builder_column][fusion_builder_column type=”1_3″ layout=”1_3″ spacing=”” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”#77b49b” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”0″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”20px” padding_right=”20px” padding_bottom=”20px” padding_left=”20px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_person name=”Peter van Dalen” title=”Penningmeester” picture=”http://hhdc.nl/wp-content/uploads/2018/05/Peter-van-Dalen-high-res-detail-225×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=””]Peter van Dalen MCM is a very experienced consultant and manager. Has a master in change management and many years of organizational change assignments.[/fusion_person][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”van-dalen” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”custom” button_gradient_top_color=”#619e85″ button_gradient_bottom_color=”#619e85″ button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][/fusion_builder_column][fusion_builder_column type=”1_3″ layout=”1_3″ spacing=”” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”#77b49b” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”0″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”20px” padding_right=”20px” padding_bottom=”20px” padding_left=”20px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_person name=”Henk Duinkerken” title=”Secretaris” picture=”http://hhdc.nl/wp-content/uploads/2018/04/Henk-Duinkerken-detail-255×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=””]Drs. Henk Duinkerken is initiator of a Nationwide NGO decision makers network focused on data driven innovations. Has 10 years of chairmanship in social housing cooperations.[/fusion_person][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”duinkerken” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”custom” button_gradient_top_color=”” button_gradient_bottom_color=”” button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][/fusion_builder_column][fusion_builder_column type=”1_3″ layout=”1_3″ spacing=”” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”#77b49b” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”0″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”20px” padding_right=”20px” padding_bottom=”20px” padding_left=”20px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_person name=”Wessel Kraaij” title=”Bestuurslid” picture=”http://hhdc.nl/wp-content/uploads/2018/04/Wessel-Kraaij-detail-225×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=””]Wessel Kraaij is a principal scientist at TNO and a professor of data analytics at Leiden University. His main focus is developing personalized health advice systems, using longitudinal health data of large groups of patients and healthy people.[/fusion_person][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”wessel-kraaij” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”custom” button_gradient_top_color=”#619e85″ button_gradient_bottom_color=”#619e85″ button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container][fusion_builder_container admin_label=”profielen desktop” hundred_percent=”no” hundred_percent_height=”no” hundred_percent_height_scroll=”no” hundred_percent_height_center_content=”yes” equal_height_columns=”yes” menu_anchor=”” hide_on_mobile=”large-visibility” class=”” id=”” background_color=”#619e85″ background_image=”” background_position=”center center” background_repeat=”no-repeat” fade=”no” background_parallax=”none” enable_mobile=”no” parallax_speed=”0.3″ video_mp4=”” video_webm=”” video_ogv=”” video_url=”” video_aspect_ratio=”16:9″ video_loop=”yes” video_mute=”yes” video_preview_image=”” border_size=”” border_color=”” border_style=”solid” margin_top=”” margin_bottom=”” padding_top=”” padding_right=”” padding_bottom=”60px” padding_left=”” admin_toggled=”yes”][fusion_builder_row][fusion_builder_column type=”1_4″ layout=”1_5″ spacing=”20px” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”1″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”10px” padding_right=”10px” padding_bottom=”10px” padding_left=”10px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_person name=”Gaston Remmers” title=”Voorzitter” picture=”http://hhdc.nl/wp-content/uploads/2018/04/Gaston-Remmers-detail-255×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”center” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=”” /][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”remmers” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”default” button_gradient_top_color=”#619e85″ button_gradient_bottom_color=”#619e85″ button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][fusion_modal name=”remmers” title=”Dr. Gaston Remmers” size=”large” background=”#ffffff” border_color=”” show_footer=”yes” class=”” id=””]Gaston Remmers (1965) is a professional with over 30 years of experience in designing and managing complex multistakeholder projects and programs, in The Netherlands and abroad. Originally trained as a sociologist, he has a sharp eye on governance issues and power relations. The red thread in his career is the transformation of sectors with a dominant top-down approach, into systems in which a re-allocation of benefits takes place in favor of those groups that usually occupy a low status, while at the same time increasing overall societal value. He has done extensive work, both as a researcher and as a consultant, to redesign socio-economic interaction in the agro food sector and in regional spatial planning schemes, involving a revalorization of the data and knowledge of individual farmers and citizens. This has led to more environmentally sustainable farming practices, and better spatial plans that are very attractive for both citizens and enterprises.
Being a patient himself and having experienced the weak position of patients in the health care system and health data trade, he has been one of the creators of the Holland Health Data Co-operative, as a necessary vehicle that stands for a citizen-owned, social enterprise that enhances societal value. His contribution, as chair of the Holland HDC, is his focus on the purpose of Holland HDC, his extensive network among patient organizations, his potential to conceive of innovative cross-sectoral business cases, and his ability to manage multistakeholder coalitions, and his communication skills.
He has been working together with the other members of the HHDC board for over one-and-half year, and together they have been able to complement each other’s qualities.

Dr. Gaston Remmers is founder of several Dutch NGO’s such as Platform Patients and Food and Foundation My Data Our Health (one of the founding parents of HHDC) and runs himself a consultancy firm on sustainable habitat development.[/fusion_modal][/fusion_builder_column][fusion_builder_column type=”1_4″ layout=”1_5″ spacing=”20px” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”1″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”10px” padding_right=”10px” padding_bottom=”10px” padding_left=”10px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_person name=”Peter van Dalen” title=”Penningmeester” picture=”http://hhdc.nl/wp-content/uploads/2018/05/Peter-van-Dalen-high-res-detail-225×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”center” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=”” /][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”van-dalen” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”default” button_gradient_top_color=”#619e85″ button_gradient_bottom_color=”#619e85″ button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][fusion_modal name=”van-dalen” title=”Peter van Dalen” size=”large” background=”#ffffff” border_color=”” show_footer=”yes” class=”” id=””]Peter van Dalen MCM is a very experienced consultant and manager. Has a master in change management and many years of organizational change assignments. For the last five years, as director of IJsselwijs foundation, an NGO, he has been mainly engaged in innovation in the social domain In Rotterdam. Both in the field of health, work, healthy aging, home technology and talent development in primary school children. The last year and a half also as one of the founding fathers involved in the founding of the HHDC.
Peter has a lot of experience with operations, from 500K to 120 million per year. He is chairman of the board of the Rotterdam fund and board member of the Life Rotterdam Consortium. As CFO he is responsible within the team for the development of the business case of the HHDC.
Peter is a real team player and connector, likes to look outside the usual paths and achieves results.[/fusion_modal][/fusion_builder_column][fusion_builder_column type=”1_4″ layout=”1_5″ spacing=”20px” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”1″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”10px” padding_right=”10px” padding_bottom=”10px” padding_left=”10px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_person name=”Henk Duinkerken” title=”Secretaris” picture=”http://hhdc.nl/wp-content/uploads/2018/04/Henk-Duinkerken-detail-255×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”center” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=”” /][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”duinkerken” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”default” button_gradient_top_color=”” button_gradient_bottom_color=”” button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][fusion_modal name=”duinkerken” title=”Drs. Henk Duinkerken” size=”large” background=”#ffffff” border_color=”” show_footer=”yes” class=”” id=””]Drs. Henk Duinkerken is initiator of a Nationwide NGO decision makers network focused on data driven innovations. Has 10 years of chairmanship in social housing cooperations. Long before data driven innovations were common, he professionalized the way nonprofit organizations see and grasp new opportunities. He is active in the (tech-enabled) renewal of special transport for disabled people, chairman of the Dutch foundation “My Data Our Health” and co-founder of the Microbiome Center providing patients with personalized microbiome medicine.[/fusion_modal][/fusion_builder_column][fusion_builder_column type=”1_4″ layout=”1_5″ spacing=”20px” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”1″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”10px” padding_right=”10px” padding_bottom=”10px” padding_left=”10px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_person name=”Wessel Kraaij” title=”Bestuurslid” picture=”http://hhdc.nl/wp-content/uploads/2018/04/Wessel-Kraaij-detail-225×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”center” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” social_icon_boxed_colors=”” social_icon_tooltip=”none” blogger=”” deviantart=”” digg=”” dribbble=”” dropbox=”” facebook=”” flickr=”” forrst=”” googleplus=”” instagram=”” linkedin=”” myspace=”” paypal=”” pinterest=”” reddit=”” rss=”” skype=”” soundcloud=”” spotify=”” tumblr=”” twitter=”” vimeo=”” vk=”” xing=”” yahoo=”” yelp=”” youtube=”” email=”” show_custom=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”witte-tekst” id=”” /][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][fusion_button link=”” title=”” target=”_self” link_attributes=”” alignment=”center” modal=”wessel-kraaij” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” color=”default” button_gradient_top_color=”#619e85″ button_gradient_bottom_color=”#619e85″ button_gradient_top_color_hover=”” button_gradient_bottom_color_hover=”” accent_color=”” accent_hover_color=”” type=”” bevel_color=”” border_width=”” size=”medium” stretch=”no” shape=”” icon=”” icon_position=”left” icon_divider=”no” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=””]Lees Meer[/fusion_button][fusion_modal name=”wessel-kraaij” title=”Prof. Dr. Wessel Kraaij” size=”large” background=”#ffffff” border_color=”” show_footer=”yes” class=”” id=””]Wessel Kraaij is a principal scientist at TNO and a professor of data analytics at Leiden University. His main focus is developing personalized health advice systems, using longitudinal health data of large groups of patients and healthy people. Wessel is well connected to the research domain of big data analytics, is a regular speaker about data governance, privacy preserving analytics. He has secured several million euro of funding for ICT and data science research projects related to personal health data and patient generated data. Within HHDC, Wessel Kraaij is responsible for the selection of a suitable Health database infrastructure and planning new extensions.[/fusion_modal][/fusion_builder_column][fusion_builder_column type=”1_1″ layout=”1_1″ spacing=”” center_content=”no” link=”” target=”_self” min_height=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”0″ border_color=”” border_style=”solid” border_position=”all” padding_top=”” padding_right=”” padding_bottom=”” padding_left=”” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”” top_margin=”30px” bottom_margin=”” border_size=”” icon=”” icon_circle=”” icon_circle_color=”” width=”” alignment=”center” /][/fusion_builder_column][/fusion_builder_row][/fusion_builder_container][fusion_builder_container admin_label=”profielen ipad” hundred_percent=”no” hundred_percent_height=”no” hundred_percent_height_scroll=”no” hundred_percent_height_center_content=”yes” equal_height_columns=”yes” menu_anchor=”” hide_on_mobile=”medium-visibility” class=”” id=”” background_color=”#619e85″ background_image=”” background_position=”center center” background_repeat=”no-repeat” fade=”no” background_parallax=”none” enable_mobile=”no” parallax_speed=”0.3″ video_mp4=”” video_webm=”” video_ogv=”” video_url=”” video_aspect_ratio=”16:9″ video_loop=”yes” video_mute=”yes” video_preview_image=”” border_size=”” border_color=”” border_style=”solid” margin_top=”” margin_bottom=”” padding_top=”” padding_right=”” padding_bottom=”60px” padding_left=”” admin_toggled=”yes”][fusion_builder_row][fusion_builder_column type=”1_2″ layout=”1_3″ spacing=”20px” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”1″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”10px” padding_right=”10px” padding_bottom=”10px” padding_left=”10px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_person name=”Gaston Remmers” title=”Voorzitter” picture=”http://hhdc.nl/wp-content/uploads/2018/04/Gaston-Remmers-detail-255×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”” pic_style_color=”” pic_bordersize=”” pic_bordercolor=”” pic_borderradius=”” icon_position=”” social_icon_boxed=”” social_icon_boxed_radius=”” social_icon_color_type=”” social_icon_colors=”” 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ONDERSTEUNINGSTEAM

[/fusion_title][/fusion_builder_column][fusion_builder_column type=”1_5″ layout=”1_5″ spacing=”” center_content=”no” link=”” target=”_self” min_height=”” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” background_color=”” background_image=”” background_position=”left top” undefined=”” background_repeat=”no-repeat” hover_type=”none” border_size=”1″ border_color=”#77b49b” border_style=”solid” border_position=”all” padding_top=”10px” padding_right=”10px” padding_bottom=”” padding_left=”10px” margin_top=”” margin_bottom=”” animation_type=”” animation_direction=”left” animation_speed=”0.3″ animation_offset=”” last=”no”][fusion_person name=”Erik van Oorschot” title=”Business developer, Medical Delta” picture=”http://hhdc.nl/wp-content/uploads/2018/05/Erik-van-oorschot-high-res-2-detail-231×300.jpg” pic_link=”” linktarget=”_self” pic_style=”none” hover_type=”none” background_color=”” content_alignment=”center” pic_style_color=”” pic_bordersize=”” 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De Holland Health Data Coöperatie is ontstaan vanuit de inzet van de volgende organisaties:

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Hun kwaliteiten zijn complementair, en allen belangrijk om HHDC tot een succes te maken. Zo heeft Medical Delta een groot netwerk onder onderzoeksinstellingen, zorginstellingen en health bedrijven in de regio Zuid-Holland. TNO heeft beschikking over veel kennis en technologie. Mijn Data Onze Gezondheid staat pal voor het ethisch gebruik van de data, de empowerment van burgers en patiënten en citizen science. Stichting IJsselwijs staat borg voor het dienstbaar zijn aan burgers en creëert het tastbare projecten waarin dat voelbaar wordt. De gemeente Rotterdam zorgt voor initiële funding. Met het LUMC zijn voorts afspraken gemaakt over het veilig en betrouwbaar opslaan van de data.

[/fusion_text][fusion_images picture_size=”auto” hover_type=”none” autoplay=”yes” columns=”5″ column_spacing=”30″ scroll_items=”1″ show_nav=”no” mouse_scroll=”yes” border=”no” lightbox=”no” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=””][fusion_image image=”http://hhdc.nl/wp-content/uploads/2018/04/Gemeente-Rotterdam-logo-trans.png” image_id=”512″ link=”https://www.rotterdam.nl” linktarget=”_self” alt=”gemeente rotterdam logo” /][fusion_image image=”http://hhdc.nl/wp-content/uploads/2018/04/Mijn-data-onze-gezondheid-logo-trans.png” image_id=”513″ link=”http://mdog.nl” linktarget=”_self” alt=”mijn data onze gezondheid logo” /][fusion_image image=”http://hhdc.nl/wp-content/uploads/2018/04/TNO-logo-trans-2.png” image_id=”524″ link=”https://www.tno.nl/nl/” linktarget=”_self” alt=”tno innovation for live logo” /][fusion_image image=”http://hhdc.nl/wp-content/uploads/2018/04/IJsselwijs-logo-trans.png” image_id=”515″ link=”http://www.ijsselwijs.nl/web/home.php” linktarget=”_self” alt=”stichting ijsselwijs logo” /][fusion_image image=”http://hhdc.nl/wp-content/uploads/2018/04/Medical-delta-logo-trans-2.png” image_id=”525″ link=”http://www.medicaldelta.nl” linktarget=”_self” alt=”Medical delta logo” /][/fusion_images][fusion_separator style_type=”none” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” sep_color=”#386955″ top_margin=”60px” bottom_margin=”” border_size=”1px” icon=”” icon_circle=”” icon_circle_color=”” width=”60%” alignment=”center” /][fusion_title margin_top=”0px” margin_bottom=”20px” hide_on_mobile=”small-visibility,medium-visibility,large-visibility” class=”” id=”” size=”1″ content_align=”center” style_type=”none” sep_color=””]

SAMENWERKINGSPARTNERS

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De Holland Health Data Coöperatie werkt samen met diverse organisaties.

Okapion is gespecialiseerd in ‘human-centered’ ontwerp van applicaties. Dat wil zeggen: vanuit het perspectief van mensen die een applicatie gaan gebruiken.

Share2Care komt voort uit de Zorgambassade, en beoogt mensen op toegankelijke wijze in staat te stellen onderzoek te ondersteunen waar zij echt in geloven. In 2020 heeft Share2Care laten zien dat patiënten (medische) data ter beschikking willen stellen aan zorginnovatie waar zij in geloven, en dat er behoefte is aan een coöperatie die hen daarin ondersteunt. Share2Care en de Holland Health Data Coöperatie vullen elkaar daarom heel goed aan.

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MELD JE AAN VOOR DE NIEUWSBRIEF

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PROJECTEN

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Holland Health Data Coöperatie is een van de 10 innovatieve voortrekkersprojecten binnen de Roadmap Next Economy. Deze Roadmap is een initiatief van gemeentelijke en provinciale overheden in Zuid-Holland, geïnspireerd op het werk van Jeremy Rifkin en Jan Rotmans. De Roadmap biedt de kans om voldoende fondsen te werven om de Holland HDC werkelijkheid te laten worden. Tot die fondsen verworven zijn, wordt het denken en doen van de HHDC tastbaar gemaakt door verschillende projecten, die elk voor zich verschillende puzzelstukjes van de nieuwe data samenleving uitwerken. Deze projecten worden geleverd door de founding parents – andere partijen die menen een puzzelstuk in te vullen zijn van harte welkom.

Met de komst van PGO’s (Persoonlijke Gezondheids Omgevingen), kan straks iedereen online de eigen medische gegevens inzien, aanvullen en beheren. De combinatie van deze data heeft grote potentie voor gezondheidsonderzoek, maar de burger zelf heeft maar weinig regie en is het bovendien ondoorzichtig waarvoor en hoe je gegevens gebruikt worden. Het project Gezond AKKOORD ontwikkelt instrumenten die deelnemers aan de gezondheidsdata-coöperatie (burgers/patiënten) meer regie geven en hen in staat stelt om als collectief weerbaarder te zijn (in plaats van te moeten onderhandelen op individueel niveau, zoals nu het geval is). Concreet gaat het om een module waarmee burgers de toestemming voor het gebruik van gezondheidsgegevens voor onderzoeksdoeleinden kunnen regelen. Doel is dat deze op termijn een plug-in wordt van PGO’s. Bovendien kan de coöperatie ook bijdragen aan wetenschappelijk onderzoek.

Het project ‘Gezond AKOORD: coöperatief beheer van gezondheidsdata’ is een initiatief van de Holland Health Data Coöperatie, TNO, Stichting Mijn Data Onze Gezondheid en Okapion. Het liep tussen eind 2020 en september 2021. Het project heeft een set essentiële richtlijnen uitgewerkt om een data-coöperatie voor gezondheidsgegevens te laten slagen. Ook is een klikbaar prototype ontwikkelt om invoelbaar te maken hoe het instellen van voorkeuren voor datadelen zou kunnen werken.

Het project is tot stand gekomen met steun van SIDNfonds en het Diabetesfonds, en in-kind bijdragen van de betrokken partners. SIDNfonds motiveert haar ondersteuning als volgt: “Dit is een project uit de call ‘Je data de baas 2’. De gezondheidsdata-coöperatie erkent en bekrachtigt de individuele en collectieve positie van burgers in de internationale datahandel. Hiermee dragen ze bij aan een belangrijke schakel, die momenteel nog ontbreekt.”

Position paper: Gezond AKKOORD: coöperatief beheer van gezondheidsgegevens
Richtlijnen over:
Rapportage aandachtspunten doorontwikkeling klikbare prototype. Bekijk het klikbare prototype.

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TOEKOMSTBEELD

Wij zien voor ons dat burgers hun eigen data kunnen beheren, en ter beschikking kunnen stellen van derden, ten behoeve van onderzoek, om er gepersonaliseerde gezondheidsdiensten voor terug te krijgen, en om een deel van de data economie onder controle van burgers te krijgen. Het overgrote deel van de partijen in Nederland en daarbuiten stort zich op technische oplossingen om privacy en veiligheid te garanderen. Er is sprake van een sterke technology push. Als burgers blijven we echter de passieve ontvangers van diensten waarvan anderen denken of hopen dat die ons dienen. Ook de nieuwe Algemene Verordening Gegevensbescherming, die bedrijven en zorginstellingen verplicht om altijd aan elke burger altijd vooraf te vragen om goedkeuring voor het gebruik of delen van zijn of haar data, is onvoldoende garantie. Ons collectieve belang wordt hiermee niet persé verdedigd. In een coöperatie staan we sterker, en kunnen we afdwingen dat bedrijven goede dingen doen. En kunnen we ervoor zorgen dat de opbrengsten geherinvesteerd worden in de maatschappij.

Lang hebben veel organisaties gedacht dat het belangrijk is om een database te creëren waar zij alleen toegang toe hebben. Dat leidt tot perverse situaties, waarin grote databases veel macht hebben, maar nog steeds ineffectief zijn, omdat heel veel andere data niet zijn aangeschakeld. De enige persoon die die schakeling kan verrichten is de individuele burger. Hij of zij is de verbinder, ook wel integrator genoemd, van al die datastromen. Daarom moet die burger ook gefaciliteerd worden om die macht uit te oefenen. Daarvoor is de coöperatie.
De coöperatie heeft dus niet als ambitie om het zoveelste megadatabase station te worden, maar wil zich juist hardmaken voor een ICT-infrastructuur waarin de databases van veel partijen (of dat nu ziekenhuizen zin, of bedrijven met gezondheidsapps, of onderzoeksinstellingen, jouw eigen smartphone, of een Persoonlijke Gezondheids Omgeving) gekoppeld kunnen worden wanneer dat wenselijk is – dus niet altijd. Een gedecentraliseerd systeem, dat veiliger is. Daarom is de coöperatie voorstander van oplossingen als de Personal Health Train en de FAIR principes voor data opslag en gebruik.

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De Holland Health Data Coöperatie werkt momenteel een module uit waarmee je eenvoudig je voorkeuren voor het delen van je gezondheidsdata ten behoeve van onderzoek kunt bepalen. Zo blijf je als burger de baas. Lees hier meer