Supporting an Environment of Innovation for PAMS Part II : People and Places (Week 14)

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Maintaining a grass roots environment of innovation involves 4 key factors (Kingdon, 2011; Longest, 2010; Smith et al., 2014):

  1. Timing of the innovation or movement coincides with interest and means to move forward.
  2. The community innovates from within, spreading the change in thought, behavior, or policy in gradually increasing size of scope.
  3. A place must exist both within the philosophy of the community and in the physical sense for the innovation to to derive from.
  4. Sustained support of people involved in guiding the innovation must be realized.

Last week’s post set-up the critical timing and scope of PAMS inception and continued viability, this week will focus on the significance of people and places. In this case, place is both the environment of most PAMS initial interactions, as well as the geographical location of participants. People are part of the place as admins, participants, and supporters. People will also be discussed in the context of the origination of PAMS, and the sustained efforts to maintain the innovation.

Finding a Place

The foundation of PAMS as a modern reprisal of an ancient practice was built on the Facebook platform for social media. Networks communicate almost exclusively among the global pages through groups on Facebook, pages for participants to connect are hosted on Facebook, and the spread of awareness of the practice and networks occurred through social media networking. Place within the parenting community has been assumed to be many things, but the reality based on my own preliminary research, that of Dr. Gribble in Australia, and Dr. Palmquist in Canada indicates that there is no singular social group participating in PAMS (Gribble, 2013; Palmquist, 2014). It seems, therefore, that the place of PAMS  is one of broad social inclusion and growing acceptance. Place within healthcare and policy environments are far less clear and acceptable, as discussed in several previous posts.

Place in the geographical sense is also important regarding PAMS. The social environment surrounding lactation and breastfeeding in general impacts the scope of the practice in local communities. In countries/regions where breastfeeding is highly valued and seeing a resurgence, the pages for milksharing tend to have greater involvement. In New Zealand, as an example, the culture of PAMS also closely aligns with the values of families who choose to use cloth diapers, exchange home made and homesteaded items, and thus include PAMS as part of a greater cultural movement. The support from the general community is such that other practices, such as Grabaride (a ride sharing network) have become involved to help facilitate family connections. Here in Arizona, there are several hospitals, many IBCLCs, pediatricians (MD and NMD), midwives, and other birth workers who have supported and empowered PAMS participants. Families from all parts of the Phoenix Metro area from many different backgrounds and many different needs participate. It is a really fascinating thing to see many who receive milk in one circumstance pay forward and donate milk when their own need is resolved, or with a subsequent pregnancy. 

Sustained by People 

Shell Walker was the founder of the very first PAMS page and community on Facebook. Upon filling the need of a single client, and seeing the number of needs and offers to exchange milk, Shell quietly created a local page which sparked what is now a global phenomenon. Most pages within the PAMS networks have multiple volunteer administrators and technical support persons. With the number of milksharing pages from all networks numbering nearly 200, it is a safe estimate that at least 500 volunteers are involved in keeping these networks running at any given time. Some chose to be involved as long as they are participating in PAMS as donors or recipients, some have become involved even with grown children, and some chose to become involved and stay involved long term.

Aside from those maintaining the pages and websites for the networks, there are the participants themselves. If there was no demand for such a practice to exist, there would not be a thriving global community. If there was no need for human milk to be exchanged outside of the milk banking models of the world, there would not be for-profit companies and classified advertising seeking to benefit financially from a generally not-for-profit endeavor. Without the families who make the informed decision to engage in the practice of Private Arrangement Milk-Sharing, the questions of how have and how will PAMS networks support innovation would be moot.

Time

A less obvious component of both people and place regarding PAMS is time. Timing of the inception of the practice was critical in that an early decade would not have had the technological comfort and savvy necessary to support this practice. The time involved in building, maintaining, advocating, supporting, and researching how best to serve PAMS communities frequently tallies at 15 hours a week – per page administrator and support person. Remember, there are 500+ such people sustaining this community. Many families that choose to participate will spend several hours per exchange communicating via the networks, private messages, text messages, phone calls, emails, travel, and collecting health information. Considering the average participation duration of families being between 3-6 months, this potentially equates to dozens of hours sustaining participation per participant, per exchange (Bond, unpublished).

Closing Thoughts

PAMS is a unique, innovative intervention and work around developed from grass-roots organization to address a shortcoming of a systemic lack of support for providing human milk as the primary first food to infants around the globe. This practice is little understood by many who would seek to regulate it, even with insufficient evidence to effectively do so. Some organizations, such as the American Academy of Nursing, have reached out to begin supporting practitioners in discussing PAMS to facilitate informed consent. As a symptom of the growing dis-ease with present lactation supports particularly in the United States, PAMS provides a unique opportunity to examine parental decision making, information accessing behaviors, and experienced shortcomings of the current hegemony. Rather than dismissing this practice outright, or seeking to move against it out of ignorance, PAMS could be seen as an opportunity to generate greater social policy regarding the support, acceptance, and facilitation of lactation through conscientious, consumer driven policy.

References

Kingdon. (2010). Agendas, Alternatives, and Public Policies, Update Edition (2nd ed.). London: Longman Publishing Group.

Longest, B. B. (2010). Health policymaking in the united states. Fifth Edition. Chicago: Health Administration Press.

Smith, A., Fressoli, M., & Thomas, H. (2014). Grassroots innovation movements: Challenges and contributions. Journal of Cleaner Production, 63, 114. doi:10.1016/j.jclepro.2012.12.025

Supporting an Environment of Innovation for PAMS Part I : Time and Scope (Week 13)

ImageReferring back to the definition of innovation in Week 11, the last two blogs of this semester will flesh out some aspects of time, place, and actors in the policy landscape of private arrangement milk-sharing. In shifting the focus to the phenomenon of PAMS as a grassroots innovation, the definition will refocus a bit as well. Per Smith and colleagues (2014), a grass roots innovation as opposed to an innovation specifically of health policy movements “seek innovation processes that are socially inclusive towards local communities in terms of the knowledge, processes and outcomes involved  (pg. 2)”. Specific to social movements, Smith and colleagues further note that innovation from grass roots movements frequently result from dissenting voices with regard to some aspect of current hegemony, thus requiring practices and visions unique from those of main stream organized innovation. Grass roots innovation also has the distinction of engage local communities from the outset in instances where innovation began outside the immediate community, thus generating from inside specific communities and moving outward (Smith et al., 2014). 

This distinction from innovation as previously discussed sets the stage to discuss sustaining innovation in the specific context of PAMS. Firstly in discussing aspects of time and timing this week as they relate to scope of PAMS as a social movement of innovation in allocating human milk. Part II of this topic will focus on the people and places of the PAMS innovation movement and their critical role in sustaining the practice. Longest (2010) discusses factors pertinent to the environment from which innovation springs – 1) diverse health related problem, 2) development of possible solutions, and 3) dynamic political circumstances related to each and both. Further discussion of these factors also indicates that a characteristic of bureaucracy essential for successful innovation of policy is longevity.

Time and Timing of PAMS Innovation

Sharing of milk between families in communities is not a novel practice. From the origins of human kind, infants were fostered at the breast or on the milk of donors in times of need. The agelessness of the practice has somewhat clouded the appreciation of the exceptional alignment of events and technology at the time of PAMS gaining a foothold. Lactation and breastfeeding were only just beginning to gain some of the momentum in 2010 that we now enjoy. The many health risks to formula feeding and “booby traps” obstructing the goals of breastfeeding dyads created an environment of varied health problems families were attempting to avoid or minimize through the provision of human milk. Social media was still booming, and the reputation of Facebook as a fairly grassroots idea had not yet tarnished. Families were beginning to find comfort and support in virtual communities to support like minded parenting and lifestyle decisions. The age of “going viral” was upon the interwebs. Information access was expanding horizons of what low infrastructure and budget organizations were capable of building.

At this point, Eats On Feets was a single page in Central Arizona. Quickly it became several pages run by close knit volunteers. From there it was grown to dozens of pages all over the globe. Then the network had a philosophical rift, resulting in the original network and the newly spun off Human Milk 4 Human Babies. This in a span of months. Now there were well over 100 pages where families were connecting for PAMS, and two large networks of volunteer page administrators spending hours and hours of their own time supporting and building their local networks. Now, coming up on 4 years later, there are several more milk-sharing networks, all still founded on the original model of donated time, and dedication to local communities. To balance the interests of discussion while maintaining brevity, only Eats on Feets and Human Milk 4 Human Babies will be discussed in any specific detail.

Scope of PAMS

With respect to PAMS, I will use scope as “breadth, depth, and potential capacity”. This entire social movement began as the simple passing along of a request for milk of a single recipient needing a short term arrangement. In that capacity, the mother of the movement, Shell Walker, had no more scope of involvement than passing on a request. With the founding of the original page, that scope expanded to include a general philosophy about the sharing of human milk. When many pages began the early foundations of a network, a concerted effort was made to provide guidance for families that were not familiar with the practicalities of milk-sharing. Significant effort was made to ensure that information provided was evidence based and updated regularly. This is a very dedicated scope in the sense of breadth and depth. As a solution to the varied health concerns of the diverse participants, such a resource for PAMS is essential to the community.

Human Milk 4 Human Babies is less inclined toward resource, but far more dedicated to areas believed to be essential to social normalization of the practice. These activities include a significant presence in the media, social blogging, and a larger network. From the standpoint of scope, this is a potential capacity focus more so than an introverted depth and breadth. Both networks serve the community in the same fundamental way, enabling exchange of milk, but do so with individualized focus.

The practice as a whole is bounded in scope only by the energies of the volunteers within the network and the needs of families. Social media has enabled these networks to secure local volunteers to operate and maintain the pages, thus adding creative and energetic capacity rather than depleting a finite amount from a static number of volunteers and facilitators. The longevity and dedication of network founders has sustained the practice and enable local communities to reach out to a greater global community in times of challenge.

Closing Thoughts

It is difficult even with the best of information, intention, and available resources to generate health policy for a well defined population and practice in a way that does not need frequent correction to minimize the detrimental effects that may or may not have been foreseeable when policy was enacted (Longest, 2010). Considering the significant work still needed to describe participants and participation, policy generation at this time is premature. Considering the nature of human milk as discussed in previous posts and elaborated on through commentary by Elizabeth Brooks, it is not even clear that human milk allocation will benefit from direct policy oversight. The innovative spirit of this social movement seeking to fill a void left by insufficient support for lactation and ensuring human milk is available to all babies may not be able to continue to adapt as a global community supporting local specifics of practice with direct oversight. Where then would that leave families who have come to rely on one another to facilitate their infant feeding decisions?

References

Longest, B. B. (2010). Health policymaking in the United States (5th Ed.). Chicago, IL: Health Administration Press.

Smith, A., Fressoli, M., & Thomas, H. (2014). Grassroots innovation movements: Challenges and contributions. Journal of Cleaner Production, 63, 114. doi:10.1016/j.jclepro.2012.12.025

 

 

Breastmilk as a Billion Dollar Health Care Containment Measure (Week 12)

UntitledThe United States has the unfortunate distinction of spending more than any other country in the world on health care, and receives significantly less benefit. The Institute of Medicine provides an excellent infographic presentation of the costs of healthcare through The Healthcare Imperative. Missed prevention opportunities account for $55 BILLION USD per year. Per. Year. Bartick and Reinhold (2010) examined the direct and indirect cost savings to the United States per year if 90% of infants were breastfed exclusively for the first 6 months of life. Their conservative direct and indirect health care cost savings estimates totaled $3.4 billion USD and 911 preventable deaths. Per year. As compelling as these findings are, Rippeyoung and Noonan (2012) analyzed just the income consequences for women in the United States who breastfed for short, long, or no duration. The results indicated that the least negative impact on income (all women who gave birth suffered negative consequences compared to women who did not) came to those who breastfed for up to 6 months (short duration). It is important to note that long duration breastfeeding, even after controlling for the ability to leave the work force due to a spouse or partner with sufficient income, those who breastfed for more than 6 months suffered a greater loss of income in the short and long term than those who breastfed for short duration. So, breastfeeding as defined in these significant studies saves the country and individual families money in the short and long term – with caveats. Why then is there no communication between these topics? Why not a concerted and sustained effort to increase lactation support for working parents?

Workplace Barriers to Lactation

According to Pew Foundation estimates, a record 40% of families in the United States with children under 18 rely solely or primarily on the income of a Female parent. This translates to 40% of the primary or exclusive income providers in this country facing the knowledge that their income potential is impacted by lactation decisions – and never positively. Particularly for those in the low wage work place, the decision to persevere in lactation goals is complex. Parents know that there are serious and costly health consequences to formula in addition to the cost of the formula and feeding equipment. They also know that it is less likely to be accommodated by a low wage employer. For excellent discussion of the issues of lactation in the low wage work place,please explore the work of Janet Vaughan, WIC Breastfeeding Counselor for Monterey, CA. Many families with primary income from low wage jobs are also at risk of health disparity due to other demographic characteristics, such as ethnicity. For these families, provision of human milk is particularly important to stop the cycle of disparity.

Meeting in the Middle

If we know that billions of dollars per year can be saved directly related to health care cost, and that a reduced negative impact on the wages of recently pregnant workers can be achieved through short term breastfeeding, what is the gap and how to we bridge it? The most obvious gap is the lack of lactation support in the work place. Having a functional and comprehensive policy regarding lactating employee rights in the United States would go a long way to resolve this gap. If more families can benefit from working and lactating and move away from the deficit of formula feeding financially, it is a win for the family. If more families are able to achieve these benefits, it is a win for health care direct costs and begins to chip away at the $55 billion dollar deficit in health realization due to prevention. These two goals are therefore not mutually exclusive, and are much more likely to be mutually beneficial.

Closing Thoughts
As these policies are coming into place, it is conceivable that providing breast milk through PAMS can help to alleviate some of the health cost. Many in the health community, even among those who are genuinely supportive and knowledgeable about lactation, believe that the perceived level of risk with PAMS obtained milk outweigh potential benefits. In light of no known reports of infectious disease, milk contamination, or other serious health outcomes negatively associated with PAMS, this staunch belief is dubious. In light of the potential contribution toward potentially millions to billions of dollars in savings, from a practice that is founded on donation, it seems as though more consideration and support for moderating risk would be in order.

References

Bartick, M., & Reinhold, A. (2010). The burden of suboptimal breastfeeding in the united states: A pediatric cost analysis. Pediatrics, 125(5), e1048-e1056. doi:10.1542/peds.2009-1616

Rippeyoung, P. L. F., & Noonan, M. C. (2012). Is breastfeeding truly cost free? income consequences of breastfeeding for women. American Sociological Review, 77(2), 244-267. doi:10.1177/0003122411435477

Characteristics of Innovation and the Role of Agency in Private Arrangement Milk Sharing Policy (Week 11)

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.

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Individual Agency in the context of Health Care and Health Care Policy. Adapted from Armstrong (2014).

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.

Closing Thoughts

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.

References

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