Summary
The purpose of Learning Health Systems (LHSs) is to create a collaborative environment between clinicians, researchers, and patients with the goal of seamlessly integrating disease research with clinical practice while driving continuous learning, quality improvement, and real-time data utilization. However, the development path of LHSs has tilted towards clinician-centric advancements, leaving patients and researchers with a less robust set of tools. This article examines common factors contributing to this imbalance, aiming to better inform and guide development decisions toward more fully realizing the potential of LHSs.
Framing the discussion
Discussion of factors influencing Learning Health System (LHS) development that favor one group over another should not be misconstrued as pushback. The purpose is to raise awareness to facilitate more informed decisions about LHS objectives, roadmaps, resource allocation, and priorities. Another aim is to help ensure appropriate questions are raised about LHSs. The challenge lies in formulating the right questions, and once in place, generating answers tends to be formulaic. Also note “there are no solutions, only tradeoffs” (Thomas Sowell). Certainly, reasonable rational arguments are assumed for all development decisions, but it's crucial to recognize and understand the trade-offs. A previous blog covered the minimum core features needed in a LHS to balance the various stakeholder interests (see here).
LHS Limitations
Improved coordination between disease research and clinical care is a well-recognized challenge in healthcare. LHS applications have emerged to address this need by creating a collaborative environment among clinicians, researchers, and patients that fosters continuous learning, quality improvement, and real-time data utilization. Indeed, LHSs have been successfully deployed across a wide range of patient populations, specialties, and clinical settings.
With such success, “LHS limitations” could be approached as a design and methods critique, and/or an examination of the areas in need of further research, but that is of minor significance to the LHS development path. Instead, “LHS limitations” refers to what is missing, particularly with regards to stakeholder interests. That is, the aims and results are overwhelming oriented toward the healthcare clinician as the main beneficiary (e.g., improved clinical decision making, see here). The disproportionate emphasis on the clinician has direct and substantial effects on the LHS roadmap, most notably limited development of features tailored to patients and researchers.
For example, the vast majority of LHSs do not have a patient portal, and those that do typically only offer basic data entry (e.g., see here). Thus, patient involvement in LHS initiatives has largely been relegated to an advisory role. Similarly, LHSs are typically not designed to manage and run empirical designs (e.g., randomized controlled trials), let alone link together a series of research projects. As a result, LHSs create isolated data silos for both researchers and patients, even when working with a single disease population. For instance, patients have a separate portal account for each study. This fragmentation hinders the scalability of research activities.
Shaping the LHS development path is a challenging balancing act between various stakeholder interests, which would benefit from an increased awareness of the factors contributing to the disproportionate emphasis on clinicians. Although many of the factors have a compelling practical component, all have room for agency in the response to more effectively integrate the needs of patients and researchers into the process. Some of the main factors affecting the LHS development tilt toward clinicians are provided below.
Origin In Clinical Setting
Initial research and development efforts for LHSs were primarily driven by research practitioners within clinical settings. Understandably, these efforts tended to focus on issues that were personally familiar and had a direct impact on the clinician role.
Need For Adoption
Ideally, LHSs become an integrated, natural part of running and managing a clinical service. Gaining a foothold within the clinical setting is a crucial initial step toward this aim. Targeting direct benefits to clinical decision-makers is a compelling mechanism to encourage adoption.
Low Hanging Fruit Hazard
LHSs emerged within a landscape ripe with opportunities for new insights and improvements, selecting projects that limit overall friction is often a reasonable and preferred approach. This meant development efforts involving additional complexities, such as a patient portal or general research management tools, were often overlooked in favor of leveraging existing medical record data.
Incentives
Incentives are a powerful mechanism for shaping behavior, and the majority of LHS development incentives (e.g., economic, professional, etc.) have been oriented toward clinician healthcare delivery (e.g., improved efficiencies, quality of care, outcomes), as opposed to enhanced research infrastructure or patient experience.
Health Outcomes Research
Learning Health System (LHS) initiatives are usually led by health experts who prioritize the modeling and analysis of health outcomes data—a pursuit that, while well-intentioned and often fruitful, can inadvertently reduce patient involvement to mere health outcome reporting. More subtly, note that when outcome data are available from other sources, patients are often side-stepped altogether. Take cancer research, for instance; survival rates dominated as the primary outcome measure for decades before the field began to incorporate patient-reported quality of life metrics.
Limited Funding
Resource allocation (e.g., grant fundings) is typically narrowly defined to a single study or set of aims, hampering the development of large scale, general use research infrastructure or patient engagement tools.
Centralized vs. Distributed Knowledge
Centralized decision authority is essential to healthcare delivery and a compelling rationale for clinicians as LHS beneficiaries. Integrating distributed patient knowledge, learning, and decision agency into LHSs is in the early stages. However, enhancing the collaborative nature of the clinician-patient relationship and moving away from third-party, surrogate decision-making are key aims.
Teleological Science
Building upon previous work is fundamental in both science and software development. Thus, the early establishment of the clinician as the primary beneficiary created momentum that was carried forward.
The Kettle Is Black
In addition to shaping the current state of LHSs, these factors risk the development of a traditional approach mindset that tends to prioritize clinician perspectives when framing stakeholder interests. As a personal example showing I too fall into this trap, note I work with a group seeking to standardize neuropsychological assessment components (see blog here). After setup was complete, including clinician-related functionality (e.g., automated clinic notes), several months passed before a patient asked for some additional details about their assessment. The request indicated the information and education materials available through the portal were incomplete, suggesting opportunities to engage patients may have been overlooked (topic of forthcoming blog).
When addressing this potential mindset, note the goal is an increased awareness of the full scope of opportunity costs for all stakeholders. The intended and unintended costs and benefits of saying ‘Yes’ to one set of features must be weighed against saying 'No' to numerous other potential features. Also, it’s crucial to recognize the potential feature synergies between key stakeholders. For instance, features designed 'for patients' can also create new and valuable opportunities for clinicians and researchers to engage patients, such as using patient data to generate disease information and educational materials that fit the specific needs and interests of a patient.
There is a shift happening in LHS development toward an increased emphasis on patient and researcher-related features. Rebalancing stakeholder interests is only a small part of the change, the larger is a greater appreciation of the synergies between key stakeholders along the way to more fully realizing the potential of LHSs.
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