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Yet it remains unclear how different stakeholders, especially patients and health system leaders, perceive the benefits and challenges of enabling granular control over the sharing of de-identified medical data for research. To address this gap, we developed a high-fidelity prototype of a patient-controlled, web-based consent platform and conducted a two-phase mixed-methods study: semi-structured interviews with 16 health system leaders and a survey with 523 patient participants. While both groups appreciated the potential of such a platform to enhance transparency and autonomy, their views diverged in meaningful ways. Leaders viewed transparency and granular control through the lens of informed consent and institutional ethics, whereas patients interpreted these factors as safeguards against potential risks and uncertainties. Our findings underscore critical tensions such as individual control and research integrity. We offer design implications for building trustworthy, context-aware systems that support flexible granularity, provide ongoing benefit\u2011centered transparency, and adapt to diverse literacy and privacy needs.<\/jats:p>","DOI":"10.1145\/3788079","type":"journal-article","created":{"date-parts":[[2026,5,20]],"date-time":"2026-05-20T15:29:14Z","timestamp":1779290954000},"page":"1-33","update-policy":"https:\/\/doi.org\/10.1145\/crossmark-policy","source":"Crossref","is-referenced-by-count":0,"title":["We Need Granular Sharing of De-Identified Data\u2014But Will Patients Engage? Investigating Health System Leaders' and Patients' Perspectives on A Patient-Controlled Data-Sharing Platform CSCW043"],"prefix":"10.1145","volume":"10","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-7868-273X","authenticated-orcid":false,"given":"Xi","family":"Lu","sequence":"first","affiliation":[{"name":"University at Buffalo, SUNY","place":["Buffalo, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-2842-1478","authenticated-orcid":false,"given":"Di","family":"Hu","sequence":"additional","affiliation":[{"name":"University of California, Irvine","place":["Irvine, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-2408-6307","authenticated-orcid":false,"given":"An T.","family":"Nguyen","sequence":"additional","affiliation":[{"name":"Cedars-Sinai Medical Center","place":["Los Angeles, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-1080-3961","authenticated-orcid":false,"given":"Brad","family":"Morse","sequence":"additional","affiliation":[{"name":"University of Colorado Anschutz Medical Campus","place":["Aurora, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-6878-189X","authenticated-orcid":false,"given":"Lisa M.","family":"Schilling","sequence":"additional","affiliation":[{"name":"University of Colorado Anschutz Medical Campus","place":["Aurora, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4121-4948","authenticated-orcid":false,"given":"Kai","family":"Zheng","sequence":"additional","affiliation":[{"name":"University of California Irvine","place":["Irvine, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8157-7586","authenticated-orcid":false,"given":"Michelle S.","family":"Keller","sequence":"additional","affiliation":[{"name":"University of Southern California","place":["Los Angeles, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-8005-7327","authenticated-orcid":false,"given":"Lucila","family":"Ohno-Machado","sequence":"additional","affiliation":[{"name":"Yale","place":["New Haven, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-4056-3820","authenticated-orcid":false,"given":"Yunan","family":"Chen","sequence":"additional","affiliation":[{"name":"University of California Irvine","place":["Irvine, USA"]}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"320","published-online":{"date-parts":[[2026,5,20]]},"reference":[{"key":"e_1_3_2_2_2","doi-asserted-by":"publisher","unstructured":"2019. 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