J. Med. Internet Res. - Sharing medical data for health research: the early personal health record experience.

Tópicos

{ health(1844) social(1437) communiti(874) }
{ data(3963) clinic(1234) research(1004) }
{ age(1611) year(1155) adult(843) }
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Resumo

CKGROUND: Engaging consumers in sharing information from personally controlled health records (PCHRs) for health research may promote goals of improving care and advancing public health consistent with the federal Health Information Technology for Economic and Clinical Health (HITECH) Act. Understanding consumer willingness to share data is critical to advancing this model.OBJECTIVE: The objective was to characterize consumer willingness to share PCHR data for health research and the conditions and contexts bearing on willingness to share.METHODS: A mixed method approach integrating survey and narrative data was used. Survey data were collected about attitudes toward sharing PCHR information for health research from early adopters (n = 151) of a live PCHR populated with medical records and self-reported behavioral and social data. Data were analyzed using descriptive statistics and logistic regression to characterize willingness, conditions for sharing, and variations by sociodemographic factors. Narrative data were collected through semistructured focus group and one-on-one interviews with a separate sample of community members (n = 30) following exposure to PCHR demonstrations. Two independent analysts coded narrative data for major and minor themes using a shared rubric of a priori defined codes and an iterative inductive process. Findings were triangulated with survey results to identify patterns.RESULTS: Of PHCR users, 138 out of 151 (91%) were willing to share medical information for health research with 89 (59%) favoring an opt-in sharing model. Willingness to share was conditioned by anonymity, research use, engagement with a trusted intermediary, transparency around PCHR access and use, and payment. Consumer-determined restrictions on content and timing of sharing may be prerequisites to sharing. Select differences in support for sharing under different conditions were observed across social groups. No gender differences were observed; however differences in age, role, and self-rated health were found. For example, students were more likely than nonstudents to favor an opt-out sharing default (unadjusted odds ratio [OR] = 2.89, 95% confidence interval [CI] 1.10 - 7.62, P = .03). Participants over age 50 were less likely than younger participants to report that payment would increase willingness to share (unadjusted OR = 0.94, 95% CI 0.91 - 0.96, P < .001). Students were more likely than nonstudents to report that payment would increase their willingness to share (unadjusted OR 9.62, 95% CI 3.44 - 26.87, P < .001). Experiencing a public health emergency may increase willingness to share especially among persons over 50 (unadjusted OR 1.03, 95% CI 1.01 - 1.05, P = .02); however, students were less likely than non-students to report this attitude (unadjusted OR 0.13, 95% CI 0.05 - 0.36, P < .001). Finally, subjects with fair or poor self-rated health were less likely than those with good to excellent self-rated health to report that willingness to share would increase during a public health emergency (unadjusted OR 0.61, 95% CI 0.38 - 0.97, P = .04).CONCLUSIONS: Strong support for sharing of PCHR information for health research existed among early adopters and focus group participants, with support varying by social group under different conditions and contexts. Allowing users to select their preferred conditions for sharing may be vital to supporting sharing and fostering trust as may be development of safety monitoring mechanisms.

Resumo Limpo

ckground engag consum share inform person control health record pchrs health research may promot goal improv care advanc public health consist feder health inform technolog econom clinic health hitech act understand consum willing share data critic advanc modelobject object character consum willing share pchr data health research condit context bear willing sharemethod mix method approach integr survey narrat data use survey data collect attitud toward share pchr inform health research earli adopt n live pchr popul medic record selfreport behavior social data data analyz use descript statist logist regress character willing condit share variat sociodemograph factor narrat data collect semistructur focus group oneonon interview separ sampl communiti member n follow exposur pchr demonstr two independ analyst code narrat data major minor theme use share rubric priori defin code iter induct process find triangul survey result identifi patternsresult phcr user will share medic inform health research favor optin share model willing share condit anonym research use engag trust intermediari transpar around pchr access use payment consumerdetermin restrict content time share may prerequisit share select differ support share differ condit observ across social group gender differ observ howev differ age role selfrat health found exampl student like nonstud favor optout share default unadjust odd ratio confid interv ci p particip age less like younger particip report payment increas willing share unadjust ci p student like nonstud report payment increas willing share unadjust ci p experienc public health emerg may increas willing share especi among person unadjust ci p howev student less like nonstud report attitud unadjust ci p final subject fair poor selfrat health less like good excel selfrat health report willing share increas public health emerg unadjust ci p conclus strong support share pchr inform health research exist among earli adopt focus group particip support vari social group differ condit context allow user select prefer condit share may vital support share foster trust may develop safeti monitor mechan

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