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The debut of the Precision Medicine Initiative (PMI) is imminent. Insights from the Geisinger Health System (GHS) and the Henry Ford Health System (HFHS) suggest that realization of the PMI’s promised potential to advance biomedical discoveries and improve the health of the American people will be determined less by the supposed stars of the show (i.e., genomics and big data) and more by its supporting cast (i.e., the eager, engaged patient-participants). Nuanced perspectives underscore the importance of precision engagement to understand context, meet prospective patient-participants where they are, and optimize and sustain each individual’s willingness and ability to participate actively in PMI research activities.

Researchers at GHS and HFHS, both with extensive biobank and patient-engagement experience, initiated independent efforts in early 2016 to understand patients’ perspectives regarding the upcoming PMI. GHS, an integrated health system in central and northeast Pennsylvania known for innovation as a learning health-care system and serving rural and underserved populations, hosted a series of open discussion forums and administered an online survey to a random sample of 10,000 patient-participants from its MyCode Community Health Initiative, which comprises more than 100,000 patient-participants. HFHS, an integrated health system in metropolitan Detroit, Michigan, that is known for its population science research and serves an urban/suburban and diverse population, administered an online survey to the Henry Ford Insights Community, a virtual patient community of 4,300 patient-participants who regularly provide opinions and ideas used to improve health-care experiences. Both GHS and HFHS collected responses over a 2-week period. GHS received 566 responses (6% response rate) and HFHS received 1,576 (37%). Together, the results of these independent surveys provide insight regarding the importance of engagement for the PMI’s success and can be compared with results reported from a national online survey administered for the National Institutes of Health in 2015.1

The PMI, which presupposes increased connectivity and broad interest of the American people in being active research participants or “partners,” intends to recruit a cohort representative of the US population at an unprecedented scale—a novel approach for which not every detail can be controlled and not every potential pitfall can be anticipated.2 The PMI is a “comprehensive effort” to explore health outcomes beyond those measurable in a clinic.3 It will involve public and private partnerships working together to advance genomic medicine4 and will depend heavily on understanding and supporting engaged patients.5 Patient perspectives gleaned from these surveys (summarized in Tables 1 and 2 ) and GHS and HFHS experiences with other deliberative engagement (summarized in Table 3 ) provide insights for the PMI. Significant investment and attention must be directed to engagement in order to overcome the tendency for large collaborative projects to impose a one-size-fits-all approach to the planned communications with, recruitment of, and interactions with the prospective members of the PMI cohort.

Table 1 Summary of Geisinger Health System survey findings
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Table 2 Summary of Henry Ford Health System survey findings
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Table 3 Examples of findings from various deliberative patient-engagement activities
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Setting realistic expectations for the PMI and its prospective participants is critical, particularly regarding what information will be shared with participants, when and how it will be shared, and how to interpret and influence varying rates of participation once they are enrolled. Response rates for various activities will be highly dependent on the framing of the PMI during recruitment (e.g., whether passive participation would be permitted; whether recruitment and retention quotas set for healthcare provider organizations (HPOs) lead to the imposition of minimum participation thresholds that participants must meet to remain in the PMI cohort; or whether patients have the ability to moderate their own levels of minimal, moderate, or maximum involvement) and resources devoted to maximizing involvement (e.g., use of reminders, prompts, and targeted incentives).

Patients have indicated that learning something about their health is a main motivator for participating in the PMI, but the logistics and the scope of content have yet to be determined. Managing the PMI cohort and keeping participants interested if the processing pipeline is slow, complex, or not communicated will be difficult. Even the decision regarding who (a coordinating center or a local HPO) will serve as the point of contact for each participant is significant. The courage and energy required to initiate communication are more burdensome to participants if the contact is unfamiliar. A centralized rather than local primary contact raises the possibility that sources of confusion or bad experiences with PMI will go unnoticed, unmeasured, and unaddressed as well as the possibility that individuals with questions or concerns will find it easier to stay silent or back out entirely rather than obtain clarification. Centralized messaging from the coordinating center to the emerging cohort in the earliest phase might not be as effective as orchestration by the coordinating center of a set of carefully tailored, flexible approaches to inspire eager, active participation in which the specific HPOs initiate recruitment through the existing, trusted relationships with the patients and communities they serve and leverage prior knowledge of patient and community preferences, needs, and interests. Both surveys revealed general preferences that baseline examinations be performed in a local HPO facility. The flexibility that will be required for successful long-term commitment and involvement is not only that which addresses variation between patient-participants but also that which accommodates the variation foreseeable for each patient-participant’s interest, motivation, and ability to engage over time.

There is a fine line between motivating and alienating participants, and a fine line between, on the one hand, the need to avoid missing data and maximize sample size and statistical power and, on the other hand, an individual participant’s autonomous decision to decline some activities while remaining an active member of the PMI cohort. Accommodating life interruptions (such as needing to take a second job, caring for a new baby, or getting arrested) that might cause an individual’s involvement in research activities to plummet and leveraging a person’s heightened interest in research related to a particular event (such as a friend’s diagnosis with a condition prompting an increased interest in a person’s contribution of data, time, energy, and money to research being conducted for that disease) are important considerations. Such occurrences are likely to vary in frequency and magnitude between demographic groups.

Navigating the nuanced perspectives of patients and communities, such as those learned by GHS and HFHS in their extensive and ongoing patient-engagement experience, requires skill and finesse not easily transferred between entities or newcomers. For example, there is a strong desire for a social and emotional bond (and actual interactions and communication) between members of the PMI cohort. However, this desired communitas should not be confused with intimacy. Although the ability of family members to participate is seen as a benefit, and the potential to learn about one’s genetic ancestry might motivate individuals to join the PMI cohort, approaching extended families at annual reunions to participate in research activities could be received as an unwelcome intrusion. Additionally, not everyone who is interested in participating has the ability to participate in all PMI activities. This suggests a recruitment barrier and an engagement challenge—although individuals might be enrolled in the PMI and willing to contribute data from diverse sources, they might lack the necessary resources (such as a reliable Internet connection or cell signal at home needed to sync devices or submit online surveys) to contribute fully. Potential participants might want to know the full extent of activities expected of them before agreeing to join the PMI cohort. Accordingly, it would be advantageous to determine whether patient-partners have an option, at the outset, to participate at different levels of intensity.

Initial PMI plans suggest that it will include deliberative involvement of patients as partners in research (helping to develop research priorities, select methods, conduct the research, and distribute the results). Such types of engagement require considerable infrastructure and institutional commitment to support and manage. Public messaging of partnerships with patients and the public without corresponding actions could convert early champions into critics. Ongoing diligence is required to optimize engagement and implement participant-generated and -supported research priorities for PMI. Two such areas of ongoing attention for HFHS and GHS are (i) the onboarding processes for patients in various research roles (e.g., screening, matching, and training not only for patients but also for research personnel to enable a scientifically robust, ethically sound, productive, and meaningful collaboration to occur for all parties) and (ii) solicitation of patient input regarding which environmental factors, medical conditions, or health outcomes are prioritized for study.

Genomics and big data, cast as the leads, continue to bask in the PMI’s spotlight; however, they can only be as strong as their supporting cast. Without patients’ eagerness to participate in PMI activities, willingness to contribute biospecimens and data from diverse sources, long-term commitment, and contentment with the pace of progress, the performance of PMI genomics and big data will underachieve. We must continue to emphasize the essential role that patients—involved in PMI through precision engagement—play in realizing the potential greatness of precision medicine. Precision engagement requires significant resources and dedication to meet patients where they are (spatially, temporally, psychologically, socially, economically, etc.) and to implement strategies for research activities, recruitment, and retention that appeal to people with diverse needs, interests, and capacities for research participation; leverage the diverse motivations patients have for participating; foster communitas; and adequately accommodate life’s interruptions and distractions that could limit involvement despite patient-participants’ intentions.

Disclosure

The authors declare no conflict of interest.