Domain

Learning Health System

Type

Case Study or Comparative Case Study

Theme

effectiveness

Start Date

7-6-2014 1:15 PM

End Date

7-6-2014 2:45 PM

Structured Abstract

Introduction: One cornerstone of Patient-Centered Outcomes Research (PCOR) is the direct involvement of patients and caregivers throughout the research process. Yet researchers often cite the ability to identify patients interested and able to participate as a barrier to their inclusion in research activities. Traditionally, patient advocacy group representatives have participated in research initiatives to provide the broader patient perspective; yet such formal representation is not always available and may represent different perspectives than those of patients themselves. One example is in low back pain (LBP), one of the most important causes of functional limitations and disability worldwide. LBP is experienced by 25-50% of the adult population in the United States with nearly 1/3 of the population aged 65 and older experiencing severe LBP. Despite the prevalence of LBP, national patient advocacy organizations focused specifically on this health condition do not exist and as a result, research programs are often established without the patient voice fully represented.

Context: We present our strategy for building a patient advisory group for back pain, including examples of how patients are involved in the development, design and conduct of research.

Innovation: The Long Term Outcomes of Lumbar Epidural Steroid Injections for Spinal Stenosis Extended Research (LESSER) study, a Patient-Centered Outcomes Research Institute (PCORI) funded project; and two research initiatives funded by the Agency for Healthcare Research and Quality (AHRQ) - the Comparative Effectiveness Research Translation Network (CERTAIN) Hub and the Back pain Outcomes using Longitudinal Data Extension of Research (BOLDER) Project are all contributing to the sustainability and growth of patient involvement in research for back pain. This novel approach to developing a patient advisory group in low back pain includes 20 individuals with back pain. Involvement of patient advisors in our collective work includes development of research proposals recently submitted for funding, drafting materials for patient recruitment for study participation, input on patient recruitment strategies, and guidance on disseminating research findings. Advisors attend bi-annual in-person meetings to meet with investigators and obtain updates on research.

Discussion: We established a condition-specific advisory group for back pain drawing from patients identified through each of the initiatives interested in more active involvement in research. Members of the advisory group provide valuable input on our projects drawing from their diverse experiences with back pain including the impact that it has on day-to-day life and approaches to selecting diagnostic strategies and treatments to relieve pain including exercise, physical therapy, medication management, epidural steroid injections, and surgical interventions.

Call to Action: Patient involvement in research will continue to be a mainstay of PCOR. Building infrastructure for supporting meaningful patient-researcher collaborations is critical for success. Recognizing the resources required to sustain continued engagement there exists an opportunity for research teams to work together to support patient involvement.

Acknowledgements

The Long Term Outcomes of Lumbar Epidural Steroid Injections for Spinal Stenosis Extended Research (LESSER) is supported by the Patient-Centered Outcomes Research Institute contract # CE-12-11-4469. The Back pain Outcomes using Longitudinal Data Extension of Research (BOLDER) is supported by the Agency for Healthcare Research and Quality Grant # 1R01HS022972-01. CERTAIN Hub is supported by the Agency for Healthcare Research and Quality Grant Number R01HS022959 and the Washington State Life Sciences Discovery Fund Grant # 4593311. The content is solely the responsibility of the authors and does not necessarily represent the official views of the Agency for Healthcare Research and Quality, the Patient-Centered Outcomes Research Institute or the Washington State Life Sciences Discovery Fund.

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Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 License.

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Jun 7th, 1:15 PM Jun 7th, 2:45 PM

Collaborative Patient Engagement in the Design, Conduct, Dissemination and Translation of Patient-Centered Outcomes Research for Back Pain

Introduction: One cornerstone of Patient-Centered Outcomes Research (PCOR) is the direct involvement of patients and caregivers throughout the research process. Yet researchers often cite the ability to identify patients interested and able to participate as a barrier to their inclusion in research activities. Traditionally, patient advocacy group representatives have participated in research initiatives to provide the broader patient perspective; yet such formal representation is not always available and may represent different perspectives than those of patients themselves. One example is in low back pain (LBP), one of the most important causes of functional limitations and disability worldwide. LBP is experienced by 25-50% of the adult population in the United States with nearly 1/3 of the population aged 65 and older experiencing severe LBP. Despite the prevalence of LBP, national patient advocacy organizations focused specifically on this health condition do not exist and as a result, research programs are often established without the patient voice fully represented.

Context: We present our strategy for building a patient advisory group for back pain, including examples of how patients are involved in the development, design and conduct of research.

Innovation: The Long Term Outcomes of Lumbar Epidural Steroid Injections for Spinal Stenosis Extended Research (LESSER) study, a Patient-Centered Outcomes Research Institute (PCORI) funded project; and two research initiatives funded by the Agency for Healthcare Research and Quality (AHRQ) - the Comparative Effectiveness Research Translation Network (CERTAIN) Hub and the Back pain Outcomes using Longitudinal Data Extension of Research (BOLDER) Project are all contributing to the sustainability and growth of patient involvement in research for back pain. This novel approach to developing a patient advisory group in low back pain includes 20 individuals with back pain. Involvement of patient advisors in our collective work includes development of research proposals recently submitted for funding, drafting materials for patient recruitment for study participation, input on patient recruitment strategies, and guidance on disseminating research findings. Advisors attend bi-annual in-person meetings to meet with investigators and obtain updates on research.

Discussion: We established a condition-specific advisory group for back pain drawing from patients identified through each of the initiatives interested in more active involvement in research. Members of the advisory group provide valuable input on our projects drawing from their diverse experiences with back pain including the impact that it has on day-to-day life and approaches to selecting diagnostic strategies and treatments to relieve pain including exercise, physical therapy, medication management, epidural steroid injections, and surgical interventions.

Call to Action: Patient involvement in research will continue to be a mainstay of PCOR. Building infrastructure for supporting meaningful patient-researcher collaborations is critical for success. Recognizing the resources required to sustain continued engagement there exists an opportunity for research teams to work together to support patient involvement.