Assessment of Stakeholder Engagement in a Down Syndrome Research Study
There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subjec...
| Main Authors: | , , , , , , , |
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| Format: | Article |
| Language: | English |
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Advocate Aurora Health
2021-01-01
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| Series: | Journal of Patient-Centered Research and Reviews |
| Subjects: | |
| Online Access: | https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1777&context=jpcrr |
| _version_ | 1797935707406204928 |
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| author | Jeanhee Chung Ashwini Sarathy Yichuan Grace Hsieh Greg Estey Amy Torres Vasiliki Patsiogiannis Karen Donelan Brian G. Skotko |
| author_facet | Jeanhee Chung Ashwini Sarathy Yichuan Grace Hsieh Greg Estey Amy Torres Vasiliki Patsiogiannis Karen Donelan Brian G. Skotko |
| author_sort | Jeanhee Chung |
| collection | DOAJ |
| description | There is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subject matter experts to provide a more multifaceted, surrogate perspective. Evaluating the engagement of these stakeholder groups in research is nascent, and tools are limited. Research studies involving these individuals provide the opportunity to test new methods of measurement of stakeholder engagement in research. We conducted a 3-year research study implementing and evaluating Down Syndrome Clinic to You, an online platform for caregivers of individuals with Down syndrome who do not have access to Down syndrome specialists. We established 3 key stakeholder groups — family caregivers, primary care physicians, and medical/scientific experts in the field — who were involved from grant-writing through preparation of the final report. To assess stakeholder engagement, we utilized the Patient Engagement in Research Scale, a validated instrument originally developed to evaluate patient engagement in arthritis research. Overall, results were suggestive of strong engagement levels by the key stakeholder groups. This study contributes to the limited available literature evaluating measures of stakeholder engagement in research. |
| first_indexed | 2024-04-10T18:18:19Z |
| format | Article |
| id | doaj.art-be059028e5f54396994d2ec97381b6b2 |
| institution | Directory Open Access Journal |
| issn | 2330-0698 |
| language | English |
| last_indexed | 2024-04-10T18:18:19Z |
| publishDate | 2021-01-01 |
| publisher | Advocate Aurora Health |
| record_format | Article |
| series | Journal of Patient-Centered Research and Reviews |
| spelling | doaj.art-be059028e5f54396994d2ec97381b6b22023-02-02T07:59:28ZengAdvocate Aurora HealthJournal of Patient-Centered Research and Reviews2330-06982021-01-0181646710.17294/2330-0698.1777Assessment of Stakeholder Engagement in a Down Syndrome Research StudyJeanhee Chung0Ashwini Sarathy1Yichuan Grace Hsieh2Greg Estey3Amy Torres4Vasiliki Patsiogiannis5Karen Donelan6Brian G. Skotko7Massachusetts General Hospital, Boston, MA; Harvard Medical School, Boston, MAMassachusetts General Hospital, Boston, MAMassachusetts General Hospital, Boston, MA; Harvard Medical School, Boston, MAMassachusetts General Hospital, Boston, MAMassachusetts General Hospital, Boston, MAMassachusetts General Hospital, Boston, MAHarvard Medical School, Boston, MA; Massachusetts General Hospital, Boston, MAMassachusetts General Hospital, Boston, MA; Harvard Medical School, Boston, MAThere is growing recognition of the importance of engaging patients early in the design of research studies. For studies involving patients with intellectual and cognitive disabilities, researchers may consider engaging with family caregivers, health professionals, community advocates, and/or subject matter experts to provide a more multifaceted, surrogate perspective. Evaluating the engagement of these stakeholder groups in research is nascent, and tools are limited. Research studies involving these individuals provide the opportunity to test new methods of measurement of stakeholder engagement in research. We conducted a 3-year research study implementing and evaluating Down Syndrome Clinic to You, an online platform for caregivers of individuals with Down syndrome who do not have access to Down syndrome specialists. We established 3 key stakeholder groups — family caregivers, primary care physicians, and medical/scientific experts in the field — who were involved from grant-writing through preparation of the final report. To assess stakeholder engagement, we utilized the Patient Engagement in Research Scale, a validated instrument originally developed to evaluate patient engagement in arthritis research. Overall, results were suggestive of strong engagement levels by the key stakeholder groups. This study contributes to the limited available literature evaluating measures of stakeholder engagement in research.https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1777&context=jpcrrstakeholder engagementpatient engagement in research scalepeirsparticipatory researchdown syndromeintellectual disability |
| spellingShingle | Jeanhee Chung Ashwini Sarathy Yichuan Grace Hsieh Greg Estey Amy Torres Vasiliki Patsiogiannis Karen Donelan Brian G. Skotko Assessment of Stakeholder Engagement in a Down Syndrome Research Study Journal of Patient-Centered Research and Reviews stakeholder engagement patient engagement in research scale peirs participatory research down syndrome intellectual disability |
| title | Assessment of Stakeholder Engagement in a Down Syndrome Research Study |
| title_full | Assessment of Stakeholder Engagement in a Down Syndrome Research Study |
| title_fullStr | Assessment of Stakeholder Engagement in a Down Syndrome Research Study |
| title_full_unstemmed | Assessment of Stakeholder Engagement in a Down Syndrome Research Study |
| title_short | Assessment of Stakeholder Engagement in a Down Syndrome Research Study |
| title_sort | assessment of stakeholder engagement in a down syndrome research study |
| topic | stakeholder engagement patient engagement in research scale peirs participatory research down syndrome intellectual disability |
| url | https://institutionalrepository.aah.org/cgi/viewcontent.cgi?article=1777&context=jpcrr |
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