Patient and researcher stakeholder preferences for use of electronic health record data : a qualitative study to guide the design and development of a platform to honor patient preferences
© The Author(s) 2023. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissionsoup.com..
OBJECTIVE: This qualitative study aimed to understand patient and researcher perspectives regarding consent and data-sharing preferences for research and a patient-centered system to manage consent and data-sharing preferences.
MATERIALS AND METHODS: We conducted focus groups with patient and researcher participants recruited from three academic health centers via snowball sampling. Discussions focused on perspectives on the use of electronic health record (EHR) data for research. Themes were identified through consensus coding, starting from an exploratory framework.
RESULTS: We held two focus groups with patients (n = 12 patients) and two with researchers (n = 8 researchers). We identified two patient themes (1-2), one theme common to patients and researchers (3), and two researcher themes (4-5). Themes included (1) motivations for sharing EHR data, (2) perspectives on the importance of data-sharing transparency, (3) individual control of personal EHR data sharing, (4) how EHR data benefits research, and (5) challenges researchers face using EHR data.
DISCUSSION: Patients expressed a tension between the benefits of their data being used in studies to benefit themselves/others and avoiding risk by limiting data access. Patients resolved this tension by acknowledging they would often share their data but wanted greater transparency on its use. Researchers expressed concern about incorporating bias into datasets if patients opted out.
CONCLUSIONS: A research consent and data-sharing platform must consider two competing goals: empowering patients to have more control over their data and maintaining the integrity of secondary data sources. Health systems and researchers should increase trust-building efforts with patients to engender trust in data access and use.
| Medienart: |
E-Artikel |
|---|
| Erscheinungsjahr: |
2023 |
|---|---|
| Erschienen: |
2023 |
| Enthalten in: |
Zur Gesamtaufnahme - year:2023 |
|---|---|
| Enthalten in: |
Journal of the American Medical Informatics Association : JAMIA - (2023) vom: 04. Mai |
| Sprache: |
Englisch |
|---|
| Beteiligte Personen: |
Morse, Brad [VerfasserIn] |
|---|
| Links: |
|---|
| Themen: |
Data sharing |
|---|
| Anmerkungen: |
Date Revised 22.05.2023 published: Print-Electronic Citation Status Publisher |
|---|
| doi: |
10.1093/jamia/ocad058 |
|---|
| funding: |
|
|---|---|
| Förderinstitution / Projekttitel: |
|
| PPN (Katalog-ID): |
NLM356448517 |
|---|
| LEADER | 01000naa a22002652 4500 | ||
|---|---|---|---|
| 001 | NLM356448517 | ||
| 003 | DE-627 | ||
| 005 | 20231226070502.0 | ||
| 007 | cr uuu---uuuuu | ||
| 008 | 231226s2023 xx |||||o 00| ||eng c | ||
| 024 | 7 | |a 10.1093/jamia/ocad058 |2 doi | |
| 028 | 5 | 2 | |a pubmed24n1188.xml |
| 035 | |a (DE-627)NLM356448517 | ||
| 035 | |a (NLM)37141581 | ||
| 035 | |a (PII)ocad058 | ||
| 040 | |a DE-627 |b ger |c DE-627 |e rakwb | ||
| 041 | |a eng | ||
| 100 | 1 | |a Morse, Brad |e verfasserin |4 aut | |
| 245 | 1 | 0 | |a Patient and researcher stakeholder preferences for use of electronic health record data |b a qualitative study to guide the design and development of a platform to honor patient preferences |
| 264 | 1 | |c 2023 | |
| 336 | |a Text |b txt |2 rdacontent | ||
| 337 | |a ƒaComputermedien |b c |2 rdamedia | ||
| 338 | |a ƒa Online-Ressource |b cr |2 rdacarrier | ||
| 500 | |a Date Revised 22.05.2023 | ||
| 500 | |a published: Print-Electronic | ||
| 500 | |a Citation Status Publisher | ||
| 520 | |a © The Author(s) 2023. Published by Oxford University Press on behalf of the American Medical Informatics Association. All rights reserved. For permissions, please email: journals.permissionsoup.com. | ||
| 520 | |a OBJECTIVE: This qualitative study aimed to understand patient and researcher perspectives regarding consent and data-sharing preferences for research and a patient-centered system to manage consent and data-sharing preferences | ||
| 520 | |a MATERIALS AND METHODS: We conducted focus groups with patient and researcher participants recruited from three academic health centers via snowball sampling. Discussions focused on perspectives on the use of electronic health record (EHR) data for research. Themes were identified through consensus coding, starting from an exploratory framework | ||
| 520 | |a RESULTS: We held two focus groups with patients (n = 12 patients) and two with researchers (n = 8 researchers). We identified two patient themes (1-2), one theme common to patients and researchers (3), and two researcher themes (4-5). Themes included (1) motivations for sharing EHR data, (2) perspectives on the importance of data-sharing transparency, (3) individual control of personal EHR data sharing, (4) how EHR data benefits research, and (5) challenges researchers face using EHR data | ||
| 520 | |a DISCUSSION: Patients expressed a tension between the benefits of their data being used in studies to benefit themselves/others and avoiding risk by limiting data access. Patients resolved this tension by acknowledging they would often share their data but wanted greater transparency on its use. Researchers expressed concern about incorporating bias into datasets if patients opted out | ||
| 520 | |a CONCLUSIONS: A research consent and data-sharing platform must consider two competing goals: empowering patients to have more control over their data and maintaining the integrity of secondary data sources. Health systems and researchers should increase trust-building efforts with patients to engender trust in data access and use | ||
| 650 | 4 | |a Journal Article | |
| 650 | 4 | |a data sharing | |
| 650 | 4 | |a design | |
| 650 | 4 | |a patient privacy | |
| 650 | 4 | |a secondary data | |
| 650 | 4 | |a transparency | |
| 700 | 1 | |a Kim, Katherine K |e verfasserin |4 aut | |
| 700 | 1 | |a Xu, Zixuan |e verfasserin |4 aut | |
| 700 | 1 | |a Matsumoto, Cynthia G |e verfasserin |4 aut | |
| 700 | 1 | |a Schilling, Lisa M |e verfasserin |4 aut | |
| 700 | 1 | |a Ohno-Machado, Lucila |e verfasserin |4 aut | |
| 700 | 1 | |a Mak, Selene S |e verfasserin |4 aut | |
| 700 | 1 | |a Keller, Michelle S |e verfasserin |4 aut | |
| 773 | 0 | 8 | |i Enthalten in |t Journal of the American Medical Informatics Association : JAMIA |d 1997 |g (2023) vom: 04. Mai |w (DE-627)NLM074735535 |x 1527-974X |7 nnns |
| 773 | 1 | 8 | |g year:2023 |g day:04 |g month:05 |
| 856 | 4 | 0 | |u http://dx.doi.org/10.1093/jamia/ocad058 |3 Volltext |
| 912 | |a GBV_USEFLAG_A | ||
| 912 | |a GBV_NLM | ||
| 951 | |a AR | ||
| 952 | |j 2023 |b 04 |c 05 | ||