Special thanks this week again to Elizabeth Brooks, JD, IBCLC, FILCA for her assistance.
What is Innovation?
The Agency for Health Research and Quality has inter-related definitions of health care and health care policy innovation. Combining the two, I will be discussing innovation as a new implementation of policy, approach to clinical care, process, product, or system created with the intention to improve care and/or reduce disparities in health.
What is Agency?
Specifically, what is individual agency with respect to health care and health policy? Many definitions exist to describe an agency. In the social structural sense – an organization through which authority may be expressed by the power to effect change in the community, frequently operationalized through health care policy generation and realization. But what of the agency of the consumer of health care and health care policy? Armstrong (2014) provides a recent history of the concept of agency, although this concept is so malleable and dependent upon the specific circumstances of the bio-ethics context that a singular definition is difficult to come by. Within this blog, I will loosely define agency as the conscious state of self-awareness and reflexivity in which recognition of health risks and need for responsibility coexist with the mental capacity to comprehend the medical risks in question and to act coherently on ones’ own behalf. This definition is flexible to the individual and circumstance such that the capacity for agency is contoured by concepts of health and evidence, individual morals, political beliefs and systems, and ideological beliefs.
How does Innovation Relate to PAMS?
With respect to policy, PAMS represents an innovation in many respects. Assuming that policy is necessary and effective regarding PAMS, Brooks explains ” there are a considerable number of hurdles in regulating a substance that can be collected, handled, and regulated as a “food” (which is used everyday by healthy babies and children) but which also has profound healthcare implications when used as a “fortifier” or “medicine” or “anti-infective agent” (when used for very ill premature babies in a hospital setting.” Each of these areas represents potential for innovation in health care policy pertaining to human milk. Such an undertaking should move forward from a sound review of evidence of individual and public health. Evidence regarding the efficacy and indication of risk for the use of human milk in the various forms present in PAMS is highly limited and existing evidence from clinical use cannot be directly applied.
This complex nature is likely to make policy efforts a struggle between balancing the social construct of power through agencies and individual agency in health care with limited ability to rely on evidence to guide the process. Per Jewel and Bero (2008), health policy making informed by evidence, even when good quality and quantity of reliable evidence is available, suffers frequently from deficits. Limited technical resources for state legislators, highly limited experience in evaluating research coupled with lack of interest in attempting to understand evidence quality, and self described reliance on “gut feelings” and “common sense” prime among them. With limited in-house technical support and the reliance on emotive factors for crafting policy, a topic so easily construed to be one of lifestyle choice, cavalier minority behavior, social fad, or sensationalized as a radical action and potentially advised upon by pre-existing lobbyists with a vested interest against PAMS, it is not likely that conscientious examination of the issue will take place.
How does Agency Relate to PAMS and Policy?
The individual-centered practice of PAMS is founded on the principle of agency, central to the concept of informed consent upon which all of the major milksharing networks are based. It is the belief of the milksharing networks that individuals with the capacity and wherewithal to seek out and engage in PAMS have an inherently healthy and robust sense of agency. This agency has not yet been determined in regard to policy making. The nature of relationships involving PAMS (as described by many participants, including myself, are deeply personal. Significant involvement in the making of policy that is not likely to value input of those involved in the practice when compared to the existing influence of lobbying groups associated with various competing interests is not surprising. It is, however, distressing. Because PAMS is practiced by a relatively small community, it is distressing that rallying enough support to gain the attention of policy makers is unlikely.
The inter-relationship of agency and innovation as they intersect with policy is rather profound. Attempts currently underway and past regarding PAMS policy completely disregard the agency of participants. Justification in these instances is explained to be one of public health and the inability of an infant or young child to consent to receiving PAMS milk outweighing the agency of the caregiver. If this is so, is it not a slippery slope to governmental usurping of many more equally intimate and individual decisions regarding the care and rearing of an infant? The active and intentional exclusion of the human beings involved in the practice or health care decision being regulated is not a policy innovation anyone wants to see come into existence.
Armstrong, D. (2014). Actors, patients and agency: A recent history. Sociology of Health & Illness, 36(2), 163-174. doi:10.1111/1467-9566.12100
Brooks, E. C. Personal correspondence. March 3, 2014.
Jewell, C. J., & Bero, L. A. (2008). “Developing good taste in evidence”: Facilitators of and hindrances to evidence-informed health policymaking in state government. The Milbank Quarterly, 86(2), 177-208. doi:10.1111/j.1468-0009.2008.00519.x