Cases in Open Health Care

Let me write about an interesting and unusual research project on health care in which I am currently involved. The purpose is also to ask readers for additional input on potential cases.

The project is called Open Care, a European research project with participants from Belgium, France, Sweden and Italy. The subject is open-source solutions for sharing collective intelligence as well as community projects within health care. A well-known example of collective intelligence is Wikipedia. Collective intelligence provides significant advantages when information is widely dispersed, and often works voluntarily without either state control or for-profit motives. Also in health care, there are an increasing number of open solutions, including sites where patients can compare symptoms or potential side effects of medication or projects where rate doctors and health care professionals – e.g. The purpose of Open Care is to give inputs to European health policy design, by compiling cases of functioning open care solutions, and analyzing circumstances when health care can be designed as open, and for why self-organization takes place.

There are two classical models to organize health care services: regulated public sector activity, and privately owned firms operating in the market. While the debate has focused on the relative merits of these two classical solutions, there also exists a third option in the form of self-organized community projects – as pointed out by economist Elinor Ostrom. These include self-organized community projects, collective intelligence knowledge creation, quasi-markets, and evasive entrepreneurship that circumvents existing regulation.

The major problem of health care in Europe and the United States is the high rate in cost increase. Technological improvement can either focus on improving quality for given cost or decrease cost for given quality. The ethics and public organization of health care tends to incentivize technological change focused on increasing quality regardless of cost rather than lowering costs. Therefore, in spite – and indeed because – of continuous technological advancements, the real net expenditures of health care tend to increase rather than decrease over time. Health care is unusual in this regard, and the fact that health care expenditures rise more rapidly than in other sectors has meant that it consumes a larger share of the GDP, both in Europe and the US.



At the same time, the high degree of bureaucracy and regulation make health care a sector where innovation is difficult. In order to ensure equality of access, health care is heavily regulated and often publicly financed. This makes entrepreneurship and experimentation in the health care sector difficult. Community-based and voluntary open care projects have the advantage of allowing small-scale experimentation in various elements of health care, without risking the existing system.

As can be expected, IT plays a central role in facilitating this type of open collective intelligence and community projects. Effective IT solutions lower the cost of participation and make geographic factors unimportant. This can, for instance, create sufficient critical mass for patients with rare diseases or on rare medication to compile symptoms or share experience with patients in other cities or countries.

Problems such as those described above in the health care sector have encouraged numerous civil society initiatives in Europe, many of which are based around IT and experimental technology. One prominent example engaged in open care is the tech community Edgeryders, which is active in promoting open health care.

One type of community care is where participation in the production itself gives health benefits. This is usually the case for mental health and addiction disorders. There are several highly successful such models in Europe, whereby participants with such health problems help providing health with therapeutic benefits for themselves. Addiction programs where participants both receive help and give support to others with similar experience and problems is a clear example. The therapeutic effect of participation is not replicated by the conventional hospital system regardless of how efficient it is. One famous example of this is the world-wide initiative Alcoholics Anonymous.

Other forms of self-organized health care provision in Europe are often found in rural regions, with a lack of financing for public health activities. Following a period of economic crises in Greece, for example, self-organized medical centers were created by health workers who offered their services for free. The space, equipment and medicine were in turn donated. Similar self-organized health activities have been directed to migrants residing in refugee camps in Greece, again as a reaction to the lack of publicly funded health care.

Another type of open care programs are not directly about health but use open solutions for the infrastructure of health care. Examples include open-source computer programs for the use of health providers that have been developed in order to reduce the often very high costs of intellectual property. PatientsLikeMe is a social patient communication platform, founded in the US in 2004. The platform, which has a global outreach, also engages many European patients and patient organizations. The health information sharing site encourages users to input data about their symptoms, environmental triggers, medication, etc. over time. The result is the creation of ongoing medical records. Users are encouraged to communicate with others, who have a similar health status and exchange knowledge. Aggregated, de-identified, data is processed by PatientsLikeMe and forms the basis of future health advancements. The mass-data gathered from this and similar platforms can in the long run play an important role in fostering collective intelligence in health care.

Many open care projects fail, and it is difficult to predict which will success. A general advantage is the low cost of experimentation, where failure only affects a few voluntary participants. Public health systems are believed to have lower tendency to experiment with novel solutions since public employees tend to averse to take risks. In small-scale community open care, failed experiments do not cause large costs of society, and a few successes that can be emulated or scaled up can outweigh the costs of failed or stagnant experiments.

Entrepreneurship typically refers to business activity. More fundamentally however it includes all innovative activities aimed at change, not only firms. According to Schumpeter, the defining characteristic of entrepreneurship is not earning profits but disrupting the current equilibrium – the “order of things” inherited from the past. Business entrepreneurs who change the market equilibrium with new technologies, products or organizations are one important group, but the term can be applied to other actions which bring about dynamic change. Entreprenureship can be both for profit or non-profit, and it can both abide by existing institutions or evade them.

Evasive entrepreneurship refers to circumventing institutional obstacles as part of novel activity. A typical case is rides-for-hire application companies such as Uber which enable their users to circumvent regulations in the local taxi market. Another example aimed at circumventing intellectual property right and monopoly power includes file-sharing platforms such as The Pirate Bay. An important recent study by Elert and Henrekson discusses evasive entrepreneurship in depth.

In health care, evasive entrepreneurship is potentially a tool that can aid institutional reform in Europe, in particular in areas such as health where institutions are obsolete or ineffective but where political reform is slow in response. An illustrative is the Helliniko Metropolitan Community Clinic in Greece, a large volunteer effort which provides health care to low-income patients. The self-organized clinic referred to as the people’s “Alternative Health System” serves patients parallel to the existing but ill functioning health care system.

Some open care projects that work in parallel to the existing, highly regulated health care system can be defined as evasive entrepreneurship. This refers to circumventing institutional obstacles as part of novel activity. This is done by using new technologies, finding room in existing regulations or working in the gray zone. If successful, it can make the institution being sidestepped irrelevant, or even provoke reform by highlighting its inefficiency. Evasive entrepreneurship is potentially a tool that can aid institutional reform in Europe, in particular in areas where institutions are obsolete or ineffective but where political reform is slow in response. Private evasive entrepreneurship that circumvents regulation sometimes has stronger incentives than community programs, since the entrepreneur benefits from profits if successful. In cases when these experiments work, the success can sometimes be copied by other countries without the need for evasive entrepreneurship, or identify potentially harmful regulation.

In our joint research project we are analyzing the characteristics of “open” projects in the care sector. There are a wide variety of activities in health care and related areas that have the characteristics of open care: either by using collective intelligence, or being self-organized by users.

In order to find best practice and increase the sample size, it is valuable to find more cases to analyze. Since these cases are hard to find, I thought to ask the readers of the blog to send me examples of any such cases that you may know of. If you know of any Ubers or Wikipedias in the health sector or interesting community organized clinics, please let me know. Your help is much appreciated.