Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems
Abstract Globally, health systems are increasingly striving to deliver evidence based care that improves patients’, caregivers’ and communities’ health outcomes. To deliver this care, more systems are engaging these groups to help inform healthcare service design and delivery. Their lived experience...
| Main Authors: | , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-07-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-023-00459-w |
| _version_ | 1827899591095222272 |
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| author | Nakia K. Lee-Foon Maureen Smith Sarah M. Greene Kerry Kuluski Robert J. Reid |
| author_facet | Nakia K. Lee-Foon Maureen Smith Sarah M. Greene Kerry Kuluski Robert J. Reid |
| author_sort | Nakia K. Lee-Foon |
| collection | DOAJ |
| description | Abstract Globally, health systems are increasingly striving to deliver evidence based care that improves patients’, caregivers’ and communities’ health outcomes. To deliver this care, more systems are engaging these groups to help inform healthcare service design and delivery. Their lived experiences—experiences accessing and/or supporting someone who accesses healthcare services—are now viewed by many systems as expertise and an important part of understanding and improving care quality. Patients’, caregivers’ and communities’ participation in health systems can range from healthcare organizational design to being members of research teams. Unfortunately, this involvement greatly varies and these groups are often sidelined to the start of research projects, with little to no role in later project stages. Additionally, some systems may forgo direct engagement, focusing solely on patient data collection and analysis. Given the benefits of active patient, caregiver and community participation in health systems on patient health outcomes, systems have begun identifying different approaches to studying and applying findings of patient, caregiver and community informed care initiatives in a rapid and consistent fashion. The learning health system (LHS) is one approach that can foster deeper and continuous engagement of these groups in health systems change. This approach embeds research into health systems, continuously learning from data and translating findings into healthcare practices in real time. Here, ongoing patient, caregiver and community involvement is considered vital for a well functioning LHS. Despite their importance, great variability exists as to what their involvement means in practice. This commentary examines the current state of patient, caregiver and community participation in the LHS. In particular, gaps in and need for resources to support their knowledge of the LHS are discussed. We conclude by recommending several factors health systems must consider in order to increase participation in their LHS. Systems must: (1) assess patients’, caregivers and community understanding of how their feedback are used in the LHS and how collected data are used to inform patient care; (2) review the level and extent of these groups’ participation in health system improvement activities; and (3) examine whether health systems have the workforce, capacity and infrastructure to nurture continuous and impactful engagement. |
| first_indexed | 2024-03-12T23:19:59Z |
| format | Article |
| id | doaj.art-16bddefaa1164473998bf28759079325 |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-03-12T23:19:59Z |
| publishDate | 2023-07-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-16bddefaa1164473998bf287590793252023-07-16T11:31:13ZengBMCResearch Involvement and Engagement2056-75292023-07-01911510.1186/s40900-023-00459-wPositioning patients to partner: exploring ways to better integrate patient involvement in the learning health systemsNakia K. Lee-Foon0Maureen SmithSarah M. Greene1Kerry Kuluski2Robert J. Reid3Institute for Better Health, Trillium Health PartnersSG StrategiesInstitute for Better Health, Trillium Health PartnersInstitute for Better Health, Trillium Health PartnersAbstract Globally, health systems are increasingly striving to deliver evidence based care that improves patients’, caregivers’ and communities’ health outcomes. To deliver this care, more systems are engaging these groups to help inform healthcare service design and delivery. Their lived experiences—experiences accessing and/or supporting someone who accesses healthcare services—are now viewed by many systems as expertise and an important part of understanding and improving care quality. Patients’, caregivers’ and communities’ participation in health systems can range from healthcare organizational design to being members of research teams. Unfortunately, this involvement greatly varies and these groups are often sidelined to the start of research projects, with little to no role in later project stages. Additionally, some systems may forgo direct engagement, focusing solely on patient data collection and analysis. Given the benefits of active patient, caregiver and community participation in health systems on patient health outcomes, systems have begun identifying different approaches to studying and applying findings of patient, caregiver and community informed care initiatives in a rapid and consistent fashion. The learning health system (LHS) is one approach that can foster deeper and continuous engagement of these groups in health systems change. This approach embeds research into health systems, continuously learning from data and translating findings into healthcare practices in real time. Here, ongoing patient, caregiver and community involvement is considered vital for a well functioning LHS. Despite their importance, great variability exists as to what their involvement means in practice. This commentary examines the current state of patient, caregiver and community participation in the LHS. In particular, gaps in and need for resources to support their knowledge of the LHS are discussed. We conclude by recommending several factors health systems must consider in order to increase participation in their LHS. Systems must: (1) assess patients’, caregivers and community understanding of how their feedback are used in the LHS and how collected data are used to inform patient care; (2) review the level and extent of these groups’ participation in health system improvement activities; and (3) examine whether health systems have the workforce, capacity and infrastructure to nurture continuous and impactful engagement.https://doi.org/10.1186/s40900-023-00459-wLearning health systemPatient engagementStakeholder engagementCommunity basedPatient involvementResearch communities of practice |
| spellingShingle | Nakia K. Lee-Foon Maureen Smith Sarah M. Greene Kerry Kuluski Robert J. Reid Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems Research Involvement and Engagement Learning health system Patient engagement Stakeholder engagement Community based Patient involvement Research communities of practice |
| title | Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems |
| title_full | Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems |
| title_fullStr | Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems |
| title_full_unstemmed | Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems |
| title_short | Positioning patients to partner: exploring ways to better integrate patient involvement in the learning health systems |
| title_sort | positioning patients to partner exploring ways to better integrate patient involvement in the learning health systems |
| topic | Learning health system Patient engagement Stakeholder engagement Community based Patient involvement Research communities of practice |
| url | https://doi.org/10.1186/s40900-023-00459-w |
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