{"id":304,"date":"2026-10-05T15:20:32","date_gmt":"2026-10-05T14:20:32","guid":{"rendered":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/?p=304"},"modified":"2026-10-05T16:22:25","modified_gmt":"2026-10-05T15:22:25","slug":"building-better-conversations-about-patient-data","status":"publish","type":"post","link":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/building-better-conversations-about-patient-data\/","title":{"rendered":"Building better conversations about patient data"},"content":{"rendered":"

Building in reverse<\/h2>\n
\"\"<\/figure>\n

Our funding pitch for CD-HI<\/a> was centred around the need for better communications stemming from a frustration at network-building initiatives that begin enthusiastically with interesting discussions, which then struggle to gain momentum and ultimately burn out before any tangible gains forward occur.<\/p>\n

We resolved to try to build a network in reverse: starting with demonstrable outputs before bringing people together and challenging them to identify and agree where to go next.<\/strong><\/p>\n

What we achieved<\/h2>\n

During the summer of 2026, we engaged widely across our existing networks and challenged people to contribute a blog post highlighting some aspect of their work and expertise. We held a writers’ workshop where people supported each other in developing a more informal, accessible writing style than most were used to.<\/p>\n

We succeeded in commissioning 22 different blog posts covering various aspects of patient-centred data, and engaged with an artist to produce accompanying images to add a visual dimension to the writing. \u00a0 Ignoring the top-hits from a word-cloud generated from all the blogs, we can see some of the common themes such as consent, governance, trust and access our contributors focused on.<\/p>\n

\"\"<\/p>\n

Launch event<\/h2>\n

Around half of the people who attended our launch event had had nothing to do with the content generation we had done over the summer.<\/p>\n

The day comprised three elements:<\/p>\n

    \n
  1. The launch of the blog series including some lightning talks from the contributors.<\/li>\n
  2. A Q&A panel looking at what our experts thought our communications around healthcare data could and should look like in 5 years. Our external panel of Rachel Sully and Jen Selby from DHCW and Bob McAlister, representing the views of patients and the public, provided some excellent and stimulating views which were discussed more widely by the room.<\/li>\n
  3. A series of unstructured discussions on three distinct topics that attendees had suggested were important to them and developing future work around data communications.<\/li>\n<\/ol>\n

    \"\"<\/p>\n

    What\u2019s next?<\/h2>\n

    The network identified three areas to pick up for future work:<\/p>\n

      \n
    1. Developing blog posts showcasing the impact of data work locally, focusing on some of the technical elements that don\u2019t normally make it into publications.<\/li>\n
    2. Working to consolidate views and discussions around data consent and finding ways of feeding these into HCRW and Welsh Government work in this area.<\/li>\n
    3. Engaging with our PGR student community to capture their experiences and views, as they are the developing workforce for future data-led activities.<\/li>\n<\/ol>\n

       <\/p>\n","protected":false},"excerpt":{"rendered":"An overview of the CD-HI launch event and roundtable held at the September.","protected":false},"author":7176,"featured_media":306,"comment_status":"closed","ping_status":"closed","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[15],"tags":[],"class_list":["post-304","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-cd-hi"],"meta_box":[],"_links":{"self":[{"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/posts\/304","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/users\/7176"}],"replies":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/comments?post=304"}],"version-history":[{"count":14,"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/posts\/304\/revisions"}],"predecessor-version":[{"id":322,"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/posts\/304\/revisions\/322"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/media\/306"}],"wp:attachment":[{"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/media?parent=304"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/categories?post=304"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/blogs.cardiff.ac.uk\/bioresource-data-accelerator\/wp-json\/wp\/v2\/tags?post=304"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}