Table 1

Flagships as complex adaptive system (CAS)

CAS componentFlagship example
A large number of elements which interact dynamicallyKey flagship elements include patients (and their own influences outside the official healthcare system), staff (eg, different professions, hierarchies and approaches to decision-making), locations (multiple sites, laboratories and clinicians not co-located), resources (time, money, etc), organisations, leadership, clinical processes, research processes—all of which will interact.
Any element in the system is affected by and affects several other systemsFor example, the flagship is operating within the broader CAS—incorporating new genomic investigations and procedures within existing patient care pathways, and evaluating the process and outcomes. This involves an iterative process affected by (and impacting) pre-existing clinical and laboratory systems for patient assessment, decision-making and patient consent for the genetic diagnostic process, sign off, counselling, sampling, transit, batching, sequencing, computational access, analysis, interpretation, reporting, etc. Different professions interact throughout this process to make a final decision.
Non-linear interactions, so small changes can have large effectsWhile the pathway that must be taken to complete the process for any given genetic test is generally linear, the interactions within and between each stage are non-linear (eg, within the decision about which test is most appropriate for a patient, there is formal and informal discussion between clinicians and clinical geneticists about the appropriateness of genomic testing and the area of focus required) and iterative (eg, first analysis of the results may prompt re-examination of the clinical picture and alter decisions about the focus of the genomic analysis). Furthermore, the exploratory nature of flagships under a research programme introduces further ambiguity (eg, around future funding or clinical utility of genomic testing in that condition).
Openness, so it may be difficult to define system boundariesAs a broad example, the funding of resources for genomic sequencing within participating health services overlaps with existing government-commissioned resources for a flagship. As a research programme operating in a real-world health system, this scenario may affect clinical decision-making for patients due to boundaries stipulated in research protocols within which clinicians must operate.
A more specific example includes the uncertainty held regarding whether or not and when to communicate incidental findings to patients, and the ethical decision-making behind undertaking clinical re-analysis of previously collected samples as new genes are discovered.
While new knowledge for patient diagnosis and treatment is a clear benefit from the continuously evolving basic and clinical research perspective, impact on practice can involve periods of time where there is more ambiguity and uncertainty about what is best for patients. Policies help to define this but generate boundaries, which can be frustrating, particularly if they are not up to date with new evidence. This can be where deviations arise and new, informal, unrecorded patterns emerge.
A constant flow of energy to maintain the organisation of the systemFlagships require all those involved in completing the diagnostic process to be on board, but as with any health system, perceptions of value of different parts of the process, including the outcome, can vary and evolve among both patients and professionals. This can affect the willingness to participate and the flow of energy in the system.
A history whereby the past helps to shape present behaviourThe involvement of genetics and genetic specialists in patient care differs across flagships. The extent of this past involvement, and the nature of the relationships between disciplines and different locations, influences the introduction of genomics, specifically the protocols and procedures, as well as dynamics within a flagship.
Elements in the system are not aware of the behaviour of the system as a whole and respond only to what is available or known locallyFor example, flagships are operating as externally funded entities within the existing healthcare system—individuals are well aware of the need for funding but not so much the need to disinvest; they are also primarily concerned with the operations and needs of their own flagship(s). There are also other flagships as well as the health system as a whole, which have different circumstances, and are having an impact/being impacted on.