Health Commons
Book (chapter)
Source:
- Chapter 7. The Role of the State in a Commons-Creating Society. By Lukas Peter. In: Democracy, Markets and the Commons
URL = https://www.transcript-verlag.de/shopMedia/openaccess/pdf/oa9783839454244.pdf
From public health care to health commons
Lukas Peter:
"The right to health care is generally based on the right to life and well-being. More technically it can be expressed as a “positive right to basic human functional capabilities” (Ram-Tiktin 2012). While this might sound rather reasonable for some, the public provision of health care is highly contested (Epstein 1997). After discussing the problems of both market and state provision of health care, I will develop the notion of a health commons in relation to medical research and development, on the one hand, and in relation to the idea of community health center commons, on the other.
One central problem of the public provision of health care in many, if not most, Western countries is its increasing costs (Qidwai 2013). A common reason given for these substantial costs is the increase in demand for medical services. Garrett Hardin, for example, describes this problem as the “laissez-faire” provision of state services according to the Marxist principle “each according to his need” (Hardin 1977b; Hardin 1993: 242-3). In Hardin’s words, “it takes no great insight to realize that hypochondriacs, as a class, will victimize the healthy in such a system” (Hardin 1993: 243).4 Without testing the empirical validity of this rather cynical explanation, I would argue that the reasons for the rises in costs in health care are not merely due to “hypochondriacs”. Other important factors include, for example, the increase in population size, longer life expectancy and higher standards of health. Yet, some academics see the problem not merely on the demand side, but rather in a feedback loop of supply and demand in which greater investments in health care lead to improved health (and longer lives, larger populations and higher expectations) and thus require even greater expenditure in medical care. This is what some call the “Sisyphus Syndrome in Health” (Zweifel et al. 2005; Zweifel 2007).
Zweifel et al. explain this feedback loop in the following way:
- Initially, politicians decide to allocate more resources to health. If effective this intervention causes people that would have otherwise died to survive. With more survivors around, there will be additional demand for health care services. To the extent that this is financed out of private resources, there is not too much of a problem. Individuals will adjust their health insurance policies accordingly and allocate a greater share of their income to health care. However, most of these services are covered by public health insurance. Rather than accepting to pay themselves, especially older voters have an incentive to get politicians to reallocate the public budget in favor of health. The increase in health care expenditure (HCE) again creates survivors. Thus, the Sisyphus syndrome can go into its next turn. (Zweifel et al. 2005, 127; emphasis added)
Despite the plausibility of this hypothesis, their conclusion seems somewhat peculiar: the central problem does not necessarily lie in rising medical costs, but more specifically in the increasing public expenditure on health care. According to Zweifel
et al., one solution to this problem is, therefore, the privatization of healthcare.
Expenditure on health care then depends on one’s purchasing power and the ‘free’ choice to spend one’s money on one’s health. Here, it is assumed that through privatization, supply and demand will eventually balance each other out. Generally speaking, this belief that privatization will yield better outcomes in health care has become increasingly popular since the 1980s in many Western and non-Western countries (Collyer/White 2011).
The problem is, however, that agents competing on an open market must pursue profit-maximizing strategies in order to survive economically. It can therefore be assumed that the profit maximization strategy would not lead to a decrease in
health-care costs, but rather to an increase in costs. The reason for this is that private firms who are in the medical and pharmaceutical industries are not necessarily interested in lowering private expenditure on health services and products but, instead, in a perpetual increase in expenditure. Aside from using their monopoly power in patents to raise the prices of drugs, this is also achieved by developing highly specialized and exclusive treatments for those with greater purchasing power. Similar to the housing market, this implies that medical and pharmaceutical companies are not interested in the needs of those in need, that is, of those with ill health and little money. The necessary care for these people will be – and is
being – left to charity organizations or, as is mostly the case, to untrained and often
already overworked family members of the less well-off. However, in other cases,
these people in need will not receive any care services or medicinal treatment. A
privatized health-care system thus cannot fulfill its proper function of providing
all people with adequate health-care services. Instead, it will turn – and has turned
– good health into a means of social distinction and possibly even a luxury good for the affluent.
However, and more fundamentally, a health-care system that is structured according to profit maximization is, ironically, not necessarily interested in a long-term and sustainably healthy society. This is not to say that general levels of health in Western countries have not increased over the last two hundred years or that pharmaceutical and biomedical corporations produce malfunctioning or harmful drugs. The point being made here is another. The reason for this underlying disinterest of businesses in a substantially healthy society lies in the problem that if everyone were healthy, people wouldn’t go to a doctor or need drugs. Sales would sink and profits would plummet – and people would lose their jobs. The underlying and long term interest of a profit-oriented health industry is therefore not healthy citizens, but, rather, sickness and a perpetual increase in desire for more medicine and more healthcare services (Brownlee 2007). Put somewhat bluntly, profits feed off the sick.
However, the problem I am describing is not limited to entirely privatized systems of health-care provision. If profit-oriented corporations provide the drugs, machines and material infrastructure for a public health-care system, the supplyside problem of perpetually rising health-care expenditure remains. This problem is otherwise known as the medical-industrial complex (Relman 1980; Wohl 1984; Geyman 2004; Moskowitz/Nash 2008; Ehrenreich 2016: 39-77). Here, we are reminded again of Hardin’s “double C–double P game” in which the profits of the health industry are privatized while the costs are communalized. As we see, with a background arrangement based on profit maximization, both private and public systems are unsatisfactory and lead to rising costs in health – either at the cost of increasing public expenditure or at the cost of an unhealthy and run-down lower-class population. Contrary to Zweifel et al., we can therefore conclude that it is not simply public spending that leads to the “Sisyphus Syndrome”, but also a profit-oriented healthcare system that leads to ever-rising costs for society.
Parallel to the problem of housing, a possible answer to this conundrum could be the conceptualization of health care as a commons. But what would such a health-care commons look like? I cannot provide a blueprint for how a health-care commons should look. Nevertheless, I can provide a few ideas that might be helpful in understanding how a health-care commons could be organized. For this, however, let us take a step back: the more general problem we are faced with is how to create a healthy society that cultivates well-being instead of a society that values efficiency gains and economic growth. From a systemic perspective, a healthcare commons implies a general and fundamental right to a clean and healthy environment (Weston/Bollier 2013). As Smith-Nonino notes, “certainly, a de facto public health commons exists in every municipality that provides clean water, sewage disposal, or subsidized inoculations for communicable disease – services often taken for granted by most citizens” (Smith-Nonini 2006: 233). In this sense, we must emphasize that health care is not something that is realized simply through the provision of medication or an operation, but that it is, rather, an ongoing process and interaction of individuals with their socio-ecological environment. While not denying individual responsibility for one’s health, a commons approach recognizes that individuals live in a complex webs of interdependent relationships that influence their well-being and the well-being of others.
From this perspective, good health is not merely an individual effort, but is also achieved through social interactions and arrangements. To gain a more detailed understanding of what this might mean, let us analyze two facets of a healthcare commons: medical research and development and community provision of health-care services.
As just discussed, a central problem of profit-oriented health-care systems is that they cater to the needs and desires of those clients with greater purchasing power rather than focusing on widespread diseases that primarily affect poorer people. This problem is accentuated by another related issue: the privatization of research and development or, more specifically, complex and overlapping patent rights in the medical sector. Intellectual property rights are often understood as important incentives because they secure property rights in one’s labor, or rather one’s discovery, and enable those who invest in research and development to reap greater benefits from it. The flip side of these patents is, however, that they simultaneously prevent other researchers and organizations from accessing and using the knowledge that has been gained. This is one case of what Michael Heller has described as the “Tragedy of the Anticommons” (Heller 1998; Heller/Eisenberg 1998) or the “gridlock economy” (Heller 2008: 49-78). In contrast to the tragedy of the unregulated commons which leads to the overuse of resources, the tragedy of the anti-commons leads to the underuse of resources. Here, highly fragmented exclusive ownership rights impede innovation that could enable researchers to develop cheaper or possibly even better drugs. It is in this sense that Heller argues that fragmented patents can literally cost lives (ibid.: 55).
One commons-based answer to this would be – parallel to the open-source software movement – to organize medical R&D as an open-source health commons where information is shared freely among researchers and health organizations (Tenenbaum/Wilbanks 2008).
Marty Tenenbaum and John Wilbank explain this idea in their white paper on health commons:
- We envision a Commons where a researcher will be able to order everything needed to replicate a published experiment as easily as ordering DVDs from Amazon. A Commons where one can create a workflow to exploit replicated results on an industrial scale – searching the world’s biological repositories for relevant materials; routing them to the best labs for molecular profiling; forwarding the data to a team of bio-informaticians for collaborative analysis of potential drug targets; and finally hiring top service providers to run drug screens against those targets; with everything – knowledge, data, and materials – moving smoothly from one provider to the next, monitored and tracked with Fed-Ex precision; where the workflow scripts themselves can become part of the Commons, for others to reuse and improve. Health Commons' marketplace will slash the time, cost, and risk of developing treatments for diseases. (Tenenbaum/Wilbanks 2008: 3-4)
However, the point of such open-source health commons would not only be to cut
costs or to produce more, but also to democratize the medical industry. Here, it can
be assumed that the open-source structure of a health commons in research and
development would enable more people to participate and collaborate in the ‘peer
production’ of more innovative medical knowledge and needs-oriented treatments.
From a more systemic perspective, the democratization of health care can also more generally be encouraged by empowering people to take control of individual and social causes of illnesses. On a very basic level, this can begin with preventative health education in schools. With reference to medical training, this could imply the development of a profession of community doctors, who would combine the knowledge of the family doctor, the care worker, the pharmacist and the therapist. The community provisioning of health care services could, for example, be organized in community health care centers. Here, a community doctor and other care workers would provide basic and accessible health-care services to the public. Furthermore, the people seeking help in such community health commons would not simply be consumers, but would be integrated in empowering processes involving the diffusion of knowledge and practices of self-help. This could include, for example, groups like Alcoholics Anonymous, in which people with common, widespread, complex problems such as chronic back pain, migraines, burnout, (minor) depression and obesity can discuss their problems and how they deal with them. An important advantage would be that people would learn to listen to themselves and their peers instead of having to entirely depend on expensive experts. Such a community health commons could also provide simple health activities led by volunteers that aim to increase people’s individual well-being. Because care work is very time-consuming and care workers are rather limited in number, a time bank or exchange circle could be organized in which people could offer their help in simple care services in exchange for other goods or services. But these are merely some fairly concrete ideas of how such a community health commons could be organized.
On a more general level, the principles of democratic planning and self-organization would lie at the heart of community health commons.
This would, in turn, enable affected people to define for themselves how they would like to organize their local health-care services.
As we see, the cultivation of health and well-being requires, if not a lot of money, then still a lot of time for caring activities. This leads us to the more political side of the idea of a health commons and the necessity of an institutional framework that supports the creation of a healthy society. Although the notion of a ‘healthy society’ is, at present, often associated with awareness campaigns, a systemic approach to the notion of good health would go beyond the focus on single, isolated problems and would avoid the top-down implementation of certain ideas of the good. Instead it would, for example, aim towards opening up more space for people to care for themselves and for others. First and foremost, this needs to include the limitation of the working day, which would provide people with the time for these activities. Other elements of such health policies could include, for example, walking and bike paths and parks for people to exercise and relax in. In more general terms, city and regional planning is also an important aspect of the creation of a healthy and ecologically sustainable environment. All of this might sound quite self-evident and mundane, but a commons twist to these policies would entail the democratic inclusion of the people who actually live in these environments.
Furthermore, a commons approach to health, well-being and public space would involve a transformation of our understanding of public space. From the commons perspective, public space is not understood as a neutral space for everyone and no one, but rather as a common space that is shaped by the people who use it.
How these different aspects of democratic participation, common space, community building and health issues are integrated can be illustrated with the example of urban gardening, which has gained a certain popularity (Lewellen 2016; Baier et al. 2013; Seitz 2009). As we see, we have moved from the question of health via that of community organizations to that of city planning, which would normally appear to have little to do with one another. The point of the commons is, however, to see the systemic relationships between its individual components. More generally, the democratic inclusion of affected people in such processes of community-health commoning implies that people can define and develop their own understanding of health and wellbeing. But beyond this, it implies that individuals’ health and well-being is not only an interdependent component of a healthy society, but also of a healthy and sustainable environment.
To sum up: the notion of a democratic health commons clearly goes beyond state provision of basic health-care services. Nevertheless, its emphasis on open access medical research and development, on the one hand, and community provisioning, on the other, could provide strategies to improve the health of citizens without perpetually increasing health-care costs."
(https://www.transcript-verlag.de/shopMedia/openaccess/pdf/oa9783839454244.pdf)
Report
The Health Commons. How "health" is defined is essential [1] We can only address health issues with upmost intelligence with that. "Health" should be defined as pluralistically as possible. We should avoid authoritarian definitions and the health recommendations based on them as much as possible.
- proposal and report by Science Commons
URL = http://sciencecommons.org/projects/healthcommons
John Wilbanks/Marty Tenenbaum:
"Health Commons is a coalition of parties interested in changing the way basic science is translated into the understanding and improvement of human health. Coalition members agree to share data, knowledge, and services under standardized terms and conditions by committing to a set of common technologies, digital information standards, research materials, contracts, workflows, and software. These commitments ensure that knowledge, data, materials and tools can move seamlessly from partner to partner across the entire drug discovery chain. They enable participants to offer standardized services, ranging from simple molecular assays to complex drug synthesis solutions, that others can discover in directories and integrate into their own processes to expedite development — or assemble like LEGO blocks to create new services.
The Health Commons is too complex for any one organization or company to create. It requires a coalition of partners across the spectrum. It is also too complex for public, private, or non-profit organizations alone - reinventing therapy development for the networked world requires, from the beginning, a commitment to public-private partnership. Only through a public-private partnership can the key infrastructure of the Commons be created: the investments in the public domain of information and materials will only be realized if that public domain is served by a private set of systems integrators and materials, tools and service providers motivated by profit. And in turn, the long-term success of the private sector depends on a growing, robust, and self-replenishing public domain of data, research tools, and open source software."
(http://sciencecommons.org/projects/healthcommons)
Report Summary
Report: Health Commons: Therapy Development in a Networked World - an introduction and overview, by John Wilbanks and Marty Tenenbaum.
From a commentary by David Weinberger:
Marty Tenenbaum and John Wilbanks write:
"We are no longer asking whether a gene or a molecule is critical to a particular biological process; rather, we are discovering whole networks of molecular and cellular interactions that contribute to disease. And soon, we will have such information about individuals, rather than the population as a whole. Biomedical knowledge is exploding, and yet the system to capture that knowledge and translate it into saving human lives still relies on an antiquated and risky strategy of focusing the vast resources of a few pharmaceutical companies on just a handful of disease targets.
After citing more problems with the current system, the authors propose a Health Commons:
Imagine a virtual marketplace or ecosystem where participants share data, knowledge, materials and services to accelerate research. The components might include databases on the results of chemical assays, toxicity screens, and clinical trials; libraries of drugs and chemical compounds; repositories of biological materials (tissue samples, cell lines, molecules), computational models predicting drug efficacies or side effects, and contract services for high- throughput genomics and proteomics, combinatorial drug screening, animal testing, biostatistics, and more. The resources offered through the Commons might not necessarily be free, though many could be. However, all would be available under standard pre-negotiated terms and conditions and with standardized data formats that eliminate the debilitating delays, legal wrangling and technical incompatibilities that frustrate scientific collaboration today.
The paper emphasizes the need for metadata standards: “Providing such standards, Heath Commons improves and extends the public domain by
integrating hundreds of public databases into a single framework…” The Commons also provides the needed “social and legal infrastructure,” and a portal that provides the right set of services.
They hope that by lowering research costs, some of the 5,000 tropical diseases currently “uneconomical to address,” for example, will become the target of pharmaceutical R&D. “Health Commons makes it cost effective for small groups of researchers to conduct industrial scale R&D on rare diseases by exploiting the economies of scale afforded by an ecosystem of shared knowledge…”
The authors see the benefits going beyond the Commons’ value to non-profits. “Every pharmaceutical company sits on a wealth of promising targets and leads that they won’t develop themselves.”
The Health Commons could be a huge step forward. But it will take some work. “To realize the full potential, existing companies need to rethink their business models to leverage the commons.” As an example, the paper points out that “Only six out of the 1800 biotechnology companies funded since 1980 have made more money than was cumulatively invested in them.” Rather than counting striking it rich with proprietary drugs discovered via proprietary R&D platforms, perhaps companies could profit by opening up their platforms and taking a cut of any drugs discovered with them.
Finally, Health Commons will provide a way to continuously publish research, along with comments, to supplement the traditional publishing model.
Health Commons can and should be a big deal. It requires lots of pieces coming together over time, but its acknowledgment of the role of profit is encouraging, and it is in the hands of serious, committed, and wickedly smart people."
Background
David Bollier:
"Health Commons is a new spinoff of Science Commons, which itself was spawned by Creative Commons in 2005. Health Commons aims to re-imagine and reinvent the ways in which health scientists carry out their work. John Wilbanks, vice president for science at Creative Commons, and Marty Tenenbaum, an Internet commerce pioneer who founded CommerceNet and CollabRx, lay out the case for Health Commons in an excellent paper, “Therapy Development in a Networked World,” You can also watch a six-minute video explaining Health Commons here. The project is a partnership among Science Commons, CommerceNet, CollabRx and Public Library of Science.
A key goal of Health Commons is to establish “a collaborative ecosystem of knowledge and research services that can be rapidly assembled to develop new therapies with unprecedented efficiencies and economies of scale.” Although Tenenbaum and Wilbanks do not allude to Wikipedia, free/open source software and social networking websites, Health Commons clearly has in mind exploiting the same kinds of “value-creation” that occur on open platforms. This would be a stark contrast to, and huge advance over, the stodgy, conventional ways that scientists tend to work.
Participants in Health Commons would agree to standardized legal contracts and pre-negotiated licenses that will make it easier to access and share data, knowledge and physical materials. They would adapt their research to a “uniform platform architecture” so that scientists could readily share their private information and resources – “initially to one’s lab, then to collaborators, and ultimately to the greater research community.” Scientists would agree to use common digital information standards so that different databases, for example, could share datasets.
Over time, Tenenbaum and Wilbanks hope to change the very business models for developing new therapies. Instead of everyone working on their own, on in short-term, ad hoc partnerships, collaboration would be the rule until it became clear that there was something of potential value to commercialize. At that point, participants could negotiate their proprietary interests." (http://onthecommons.org/content.php?id=2018)
Discussion
David Bollier:
"If there is one problem that I have with the Health Commons, it is its unexamined assumption of health as an object of technological solutions – pills, treatments, expert-driven interventions. We surely need these approaches; they can do a world of good. But it would be a shame if the Health Commons’ vision of health as something that is delivered through scientists and drug companies were to eclipse the social dimensions of health and well-being. Besides better, faster, cheaper research, we also need a health commons that reintegrates human beings into communities of meaning and support. It hardly needs adding that we could also use a “health insurance commons” that can socialize the risks of disease and injury, much as Social Security socializes the risks of old age and disability. I’d be happier if the new project were called the “Health Research Commons.”
This is a quibble. The Health Commons is attempting something extraordinarily significant and transformative. It will be fascinating to watch the evolution of this ambitious project in the coming months and years."
(http://onthecommons.org/content.php?id=2018)