Authors: Rina V. Dhopeshwarkar, MPH, Avantika S. Shah, MPH, Priyanka J. Desai, PhD, MSPH, CPHP, James Swiger, MBE, Edwin A. Lomotan, MD, FAMIA, Prashila Dullabh, MD, FAMIA
Widely recognized as a cornerstone of high-quality person-centered care, patient engagement1 is a key component of shared decision making. When patients actively participate in care decisions,2 they are more likely to understand treatment options, adhere to treatment plans, and feel satisfied with their care.3,4 Early, continuous, and meaningful5 engagement must extend beyond clinical encounters.
Patient engagement is a critical aspect of developing effective patient-centered clinical decision support (PC CDS)(PDF, 234KB), which offers a powerful way to help patients and clinicians share and understand the potential benefits, harms, and risks of different treatments. PC CDS includes patient-facing and clinician-facing digital tools that can support patient-centered care by helping patients and clinicians make informed decisions given each patient’s circumstances and preferences. These tools provide timely, personalized information to patients, caregivers, and care teams—often at the point of care—through platforms like electronic health records (EHRs), patient portals, and mobile apps. PC CDS encompasses a spectrum of decision-making tools that significantly incorporate patient-centered factors related to knowledge, data, delivery, and use:
- Knowledge refers to the use of comparative effectiveness research (CER) or patient-centered outcomes research (PCOR) findings.
- Data focuses on incorporating patient-generated health data, patient preferences, social determinants of health, and other patient-specific information.
- Delivery refers to directly engaging patients and/or caregivers across different settings.
- Use focuses on facilitating bidirectional information exchange in support of patient-centered care, including shared decision making.6
To be truly effective, PC CDS tools must be developed “with” patients, not just “for” them. This principle is especially important in today’s push toward digitization and the rapid growth of healthcare apps. Patients want tools that reflect their lived experiences and values.7 What patients want from digital health tools often diverges from what developers assume. In other words, creating meaningful PC CDS requires engaging patients not just as end users but as participants throughout the PC CDS lifecycle, from identifying needs and priorities to design, implementation, and evaluation.8 Despite this imperative, patient engagement in PC CDS development remains limited. Too often, patients are consulted late in the process or not at all, resulting in tools that may not meet their real-world needs or priorities.9,10,11 Importantly, this engagement should also extend to families and caregivers, whose insights and experiences are essential to shaping tools that support shared decision-making and care coordination on behalf of patients.
The Clinical Decision Support Innovation Collaborative (CDSiC), a multi-year initiative funded by the Agency for Healthcare Research and Quality (AHRQ), was established to address this gap by creating a proving ground for innovation for PC CDS. Guided by a vision of patients, caregivers, and care teams having the right information at the right time to make treatment decisions, the CDSiC engaged a broad stakeholder community to advance the design, development, implementation, and evaluation of PC CDS tools that improve health outcomes for all patients.
The CDSiC embedded patient and caregiver voices across all activities, from governance and development to implementation and dissemination of tools, guides, reports, and other resources designed to inform policymakers, informaticists, clinicians, and other PC CDS stakeholders. As national priorities12 increasingly emphasize the importance of patient-centered digital innovation in health care, this article aims to share key lessons learned from CDSiC efforts to meaningfully engage patients and caregivers and how these lessons can inform future innovation in the evolving digital health ecosystem.
Comprehensive Approach to Patient Engagement
The CDSiC modeled a comprehensive approach that went beyond traditional “consultative” roles by engaging patients and caregiver representatives as partners in the project. Across the project lifecycle, the CDSiC conducted more than 200 engagements (e.g., key informant interviews, focus groups, co-design sessions) with 53 unique patient and caregiver partners. Notably, six patient partners engaged throughout the entire multi-year project, serving on the Steering Committee and Workgroups and participating in product development or pilot implementation activities. Below we share how we engaged patients and caregivers throughout CDSiC activities.
Strategic Vision and Governance. Patient and caregiver partners served on the CDSiC Steering Committee (PDF, 1.4MB), where they helped shape the initiative’s overall direction and priorities. Their participation ensured that the CDSiC strategic vision reflected the lived experiences and real-world needs of patients and families.
Product and Resource Development. Across CDSiC workgroups (PDF, 305KB), patients and caregivers participated in the development of tools, products, and resources alongside technical and clinical experts. They served as Workgroup members or participated in key informant interviews, focus group discussions, prioritization exercises, and feedback sessions. This ensured that PC CDS resources and tools were grounded in real-life applicability and addressed barriers and facilitators that matter to end users.
Pilot PC CDS Tools Co-Design and Testing. Patients and caregivers were active collaborators in pilot PC CDS projects (PDF, 421KB), where they supported co-design processes, informed implementation strategies, and helped test prototypes such as app that leverages information technology standards, text messaging, and chatbot technology to support patients with taking their hypertension medications. Their involvement strengthened the relevance and usability of these tools.
Dissemination and Knowledge Sharing. CDSiC ensured patient and caregiver voices were visible in dissemination efforts. For example, CDSiC published a dedicated patient-authored blog13 that explained the concept of PC CDS and important areas for advancement from a patient perspective. Beyond written products, CDSiC also prioritized participation in events that center patient and public engagement, such as the Patient Insight Congress, a national convening focused on patient advocacy and citizen science. Importantly, we had patient representatives participate as co-panelists in CDSiC conference presentations, thereby bringing a perspective that is less commonly represented in that professional audience. These public-facing contributions reinforced the value of patient engagement to broader audiences.
Lessons Learned About Patient Engagement
CDSiC’s approach of meaningful, continuous collaboration offer valuable lessons that highlight the importance of patient and caregiver engagement. From CDSiC’s experience and perspective, we share five lessons about patient engagement that can inform initiatives seeking to center patient and/or caregiver voices in the research, development, and deployment of digital healthcare innovations.
Lesson 1: Meaningful Patient/Caregiver Engagement Requires Involvement Across All Project Aspects. Robust patient-centered initiatives ensure that patients and caregivers are meaningfully involved in every stage of the project—from setting priorities and shaping design to implementation and evaluation. Patient partners served as thought partners, helped shape priorities through Steering Committee participation, co-developed products, and supported implementation through co-design sessions and usability testing.
Meaningful patient and caregiver engagement is rooted in a partnership that recognizes them as equal contributors whose insights and experiences are essential to project success—not just participants in isolated tasks. Moreover, the CDSiC underscored the importance of fostering a culture where patient and caregiver engagement is prioritized by all project team members. Patient engagement was prioritized and tracked throughout the project. This emphasis ensured that team members experienced firsthand how patient engagement plays an integral and essential role in setting strategic direction, influencing product development, designing PC CDS tools, and informing pilot work and dissemination.
Lesson 2: Building Resources to Engage Patients in Research and Co-Design Strengthens Field-Wide Capacity. Despite broad recognition of the importance of patient engagement, a critical gap remains in actionable tools and methods that guide meaningful integration of patient perspectives in PC CDS development and implementation. CDSiC intentionally developed practical resources that translate engagement principles into concrete guidance. These resources include patient-centered frameworks, checklists, and guiding principles designed to facilitate co-design and ensure tools meet patient needs. Moreover, CDSiC didn’t just create these tools in theory; it leveraged them in real-world settings to guide implementation, test new ideas, and identify best practices.
CDSiC’s reports and qualitative studies addressed real-world challenges such as integrating patient-generated health data and trust considerations for artificial intelligence-enabled PC CDS (PDF, 486KB), providing specific recommendations grounded in patient and caregiver perspectives. By focusing on the “how” as well as the “why” of PC CDS, these materials can help other developers and implementers move beyond theory to practical application, advancing the entire field.
Lesson 3: Sustained and Longitudinal Patient Engagement Builds Capacity and Deepens Impact. Engagement is most effective when it is continuous not episodic. Sustained involvement enables patient partners to build context, bring their voice to the table, and contribute their expertise at a deeper level over time. The CDSiC ensured a balance of both virtual and in-person touchpoints with patient partners. Creating opportunities for in-person meetings further strengthened relationships and helped build trust to sustain meaningful virtual engagement over the course of the project.
In CDSiC, consistent engagement fostered trust, enhanced continuity across project phases, and improved the quality of decision making. The long-term involvement of patient partners led to more meaningful engagement across both technical and strategic domains. What made this engagement meaningful was not just the frequency of involvement, but the depth and influence of patient contributions. Rather than reacting to a finished product, patients and caregivers shaped a tool’s direction by sharing how the information and messages fit into their lives and how they interpreted the early content before the tool was implemented. During pilot testing, we used the “think-aloud” format that encouraged real-time feedback on usability and clarity. Patient partners were prepared in advance and treated as equals, creating a safe space for honest feedback that directly informed tool refinement. This approach ensured that the tools developed were aligned with patient and caregiver needs, fostering a sense of ownership and improving the overall acceptance and effectiveness of the final product. Across all the pilot PC CDS projects implemented, more than 10 patient partners participated in co-design sessions and usability testing.
Lesson 4: Patients and Caregivers Must Have a Visible and Valued Voice. Meaningful patient engagement also requires opportunities for patients and caregiver partners to be seen, heard, and valued as experts in their own right. The CDSiC initiative prioritized creating spaces where partners could actively participate and influence the direction of the work. Beyond involvement in Workgroup and pilot project activities, patients and caregivers presented at external national conference panels featuring CDSiC work, shared their perspectives at CDSiC Annual Meeting panels, contributed blog posts reflecting their lived experience,13 and engaged in ongoing discussions and feedback loops that informed products and priorities through Steering Committee discussions.
CDSiC’s research engagement practices were not isolated or symbolic. Patient input was integrated as much as possible throughout the entire lifecycle of resource development, from initial conceptualization to dissemination. For example, for one product on patient preferences in PC CDS, we interviewed patient partners to discuss data collection methods and timepoints, which informed the full report. Subsequently, in preparing a shorter, more digestible resource, we asked patients to provide input on the document’s readability and clarity for a patient audience. This intentional visibility helped reinforce a culture in which patient contributions were seen as essential. It also signaled to all other stakeholders who typically lead PC CDS efforts—researchers, developers, clinicians, and policymakers—that patient and caregiver insights are central to creating effective, trustworthy, and usable PC CDS tools.
Lesson 5: Compensating Patient Partners for Their Time and Expertise Fosters Mutual Respect and Value. Meaningful patient engagement requires more than just inviting people to the table. It requires recognizing their contributions as vital. Patients and caregivers bring not only their time, knowledge and energy but also their lived experience and emotional capital. Providing fair compensation in a tangible way acknowledges their role as experts and reinforces their role as partners and collaborators, not volunteers. The CDSiC compensated patient and caregiver partners for their time and expertise, supporting partner retention over the multi-year initiative. Patient partners were more likely to stay engaged, deepen their involvement, and even refer others to participate, helping to create a more sustainable engagement model.
Looking Ahead
The lessons from CDSiC highlight the importance of making patient and caregiver engagement a continuous and essential component of the innovation process. As the digital health landscape continues to evolve, the recent Centers for Medicare & Medicaid Services, Assistant Secretary for Technology Policy/Office of the National Coordinator for Health Information Technology Request for Information (RFI)12 on the health technology ecosystem underscores the urgency of embedding patient engagement into digital innovation in health care.
As the health care system evolves, the lessons from CDSiC offer guideposts for embedding patient engagement into digital health innovation. Specifically, the lessons learned offer practical ideas to sustain meaningful engagement to enhance the development and implementation of patient-centered health care tools as well as the implementation of similar collaborative efforts.
1 Carman KL, Dardess P, Maurer M, Sofaer S, Adams K, Bechtel C, Sweeney J. Patient and family engagement: a framework for understanding the elements and developing interventions and policies. Health affairs. 2013 Feb 1;32(2):223-31.
2 Elwyn G, Frosch D, Thomson R, et al. Shared decision making: a model for clinical practice. J Gen Intern Med. 2012;27(10):1361-1367. doi:10.1007/s11606-012-2077-6
3 Shay LA, Lafata JE. Where is the evidence? A systematic review of shared decision making and patient outcomes. Medical decision making. 2015 Jan;35(1):114-31.
4 Hickmann E, Richter P, Schlieter H. All together now - patient engagement, patient empowerment, and associated terms in personal healthcare. BMC Health Serv Res. 2022 Sep 2;22(1):1116. doi: 10.1186/s12913-022-08501-5.
5 Muscat DM, Shepherd HL, Nutbeam D, Trevena L, McCaffery KJ. Health literacy and shared decision-making: exploring the relationship to enable meaningful patient engagement in healthcare. Journal of general internal medicine. 2021 Feb;36:521-4.
6 Dullabh P, Sandberg SF, Heaney-Huls K, Hovey LS, Lobach DF, Boxwala A, Desai PJ, Berliner E, Dymek C, Harrison MI, Swiger J, Sittig DF. Challenges and opportunities for advancing patient-centered clinical decision support: findings from a horizon scan. J Am Med Inform Assoc. 2022 Jun 14;29(7):1233-1243. doi: 10.1093/jamia/ocac059. PMID: 35534996; PMCID: PMC9196686.
7 van Leeuwen D, Mittelman M, Fabian L, Lomotan EA. Nothing for Me or About Me, Without Me: Codesign of Clinical Decision Support. Appl Clin Inform. 2022 May;13(3):641-646. doi: 10.1055/s-0042-1750355. Epub 2022 Jun 29. PMID: 35768012; PMCID: PMC9242738.
8 Dean F Sittig, Aziz Boxwala, Adam Wright, Courtney Zott, Priyanka Desai, Rina Dhopeshwarkar, James Swiger, Edwin A Lomotan, Angela Dobes, Prashila Dullabh, A lifecycle framework illustrates eight stages necessary for realizing the benefits of patient-centered clinical decision support, Journal of the American Medical Informatics Association, Volume 30, Issue 9, September 2023, Pages 1583–1589, https://doi.org/10.1093/jamia/ocad122
9 Prashila Dullabh, Shana F Sandberg, Krysta Heaney-Huls, Lauren S Hovey, David F Lobach, Aziz Boxwala, Priyanka J Desai, Elise Berliner, Chris Dymek, Michael I Harrison, James Swiger, Dean F Sittig, Challenges and opportunities for advancing patient-centered clinical decision support: findings from a horizon scan, Journal of the American Medical Informatics Association, Volume 29, Issue 7, July 2022, Pages 1233–1243, https://doi.org/10.1093/jamia/ocac059
10 Marcial LH, Richardson JE, Lasater B, Middleton B, Osheroff JA, Kawamoto K, Ancker JS, van Leeuwen D, Lomotan EA, Al-Showk S, Blumenfeld BH. The Imperative for Patient-Centered Clinical Decision Support. EGEMS (Wash DC). 2018 May 30;6(1):12. doi: 10.5334/egems.259. PMID: 30094284; PMCID: PMC6078148.
11 Dean F Sittig, Aziz Boxwala, Adam Wright, Courtney Zott, Priyanka Desai, Rina Dhopeshwarkar, James Swiger, Edwin A Lomotan, Angela Dobes, Prashila Dullabh, A lifecycle framework illustrates eight stages necessary for realizing the benefits of patient-centered clinical decision support, Journal of the American Medical Informatics Association, Volume 30, Issue 9, September 2023, Pages 1583–1589, https://doi.org/10.1093/jamia/ocad122
12 Centers for Medicare & Medicaid Services. (2025, May 16). Request for Information; Health Technology Ecosystem. Federal Register, 90(95), 21034–21036. Available at: https://www.federalregister.gov/documents/2025/05/16/2025-08701/request-for-information-health-technology-ecosystem
13 Adams L, Collyar D, Dobes A, Monkhouse K, Peterson T, Dhopeshwarkar, R. Improving patient-centered care with decision tools that build trust. National Patient Advocate Foundation; Available at: https://www.npaf.org/blogs/improving-patient-centered-care-with-decision-tools-that-build-trust/