The Role of Co-Creation in Changemaker Health

Changemaker Health Series — Essay №2

Megan Strickland

Published in

Changemakers

11 min readJan 9, 2017

How institutions can place patient wellbeing at the center of their operations

image source: Structural Genomics Consortium

Authored by Megan Strickland, Knowledge Manager at Ashoka Changemakers; Editing and contributions by Sarah Jefferson and Yeleka Barrett

As social innovators across the globe spread access to patient-centered healthcare systems, they must navigate an expansive ecosystem of players from governmental bodies, regulatory agencies, academia, research institutions, private healthcare companies and the pharmaceutical industry. These social innovators challenge us to envision a world in which even the institutions that might seem furthest removed from individual patients — such as biomedical tech firms — can indeed place patient wellbeing at the center of their operations. This article series refers to the shift toward patient-centered healthcare as “changemaker health,” which necessitates a shift in how healthcare actors organize for impact.

Social & business co-creation contributes to a changemaker health ecosystem

Co-creation in the context of changemaker health is a partnership among two or more organizations across different sectors that brings together their unique and equally valued capabilities to create or improve — at scale — a product, service or business model that places patients at the center of care. Medical research traditionally is an area of health that does not directly work with patients. However, there are emerging examples of co-creation among the scientific community between social entrepreneurs, large corporations and government bodies that are shifting drug discovery and treatment models to become more patient-centered. This article will focus on several of these co-creation examples.

Co-creation across sectors is a critical approach for unlocking changemaker health for two reasons. First, it allows for patient empowerment models to scale through well-established institutions like corporations and governmental bodies. Second, it opens avenues for stakeholders who traditionally have little to no connection to patients to better understand their voices and needs and thus create patient-centered products and services.

Co-creation combines the competitive advantages of diverse stakeholders to pursue impact that no stakeholder could achieve alone. For example, social entrepreneurs are experts at understanding the challenges, needs and untapped resources of their clients and customers — often people who are marginalized by systemic problems like racism and income inequality — and at creating systems-changing business models that address these root societal problems. However, social entrepreneurs often do not have the financing or distribution channels required to scale their models. On the other hand, governments and large corporations tend to have established value chains and large pools of economic and human resources, but they often lack an understanding of and access to their citizenry and customer base. Thus, combining the assets and expertise of social entrepreneurs, corporations and governments can create ecosystems of holistic care that are truly centered around the patient or end-user, and which achieve breakthrough treatment options and innovations in the delivery and quality of care.

Due to the complex, interconnected nature of patient needs, if these institutions continue to work separately within their traditional silos — even if within their silos they are each trying their best to be patient-centered — they would still fail to create an ecosystem where the needs of patients are fully met.

Design principles for co-creation

The work of social innovators in the area of changemaker health points toward four guiding principles for establishing co-creation partnerships between social entrepreneurs, corporations and governmental bodies. These include:

Establish hybrid value systems
Align incentives to benefit patients
Openly share data and information
Pool financing opportunities and share risks

Establish hybrid value systems

Many social innovators demonstrate how co-creation can lead to hybrid value systems. Hybrid value systems are a framework for reorganizing across sectors and teams to transform markets at scale for the good of all. An increasing number of management innovators from John Browne of BP to Robin Chase of ZipCar are arguing that to find the answers they need to to grow and thrive, leaders in business and government need to develop the capacity to engage with society in more direct, responsive, and collaborative ways. Hybrid value systems are guided by the idea that such engagement can help leaders understand the changing needs, tastes, and priorities of citizens, identify new markets, unlock sustainable value chains and bring their institutions’ practices and processes into harmony with the systems in which they operate.

An example of a hybrid value system that is scaling changemaker health is the partnership between Danish social enterprise Specialisterne — founded by social entrepreneur Thorkil Sonne — and the German multinational software company SAP. The program they have co-developed matches people on the autism spectrum who have had difficulties finding work with jobs in the IT sector.

Within this hybrid value system, the social enterprise gains a significant resource to offer its clients — a job — and the company gains a highly capable and dependable employee recruitment base. In addition to training the new employees, Specialisterne also provides training to the software company’s workforce on how to effectively manage and collaborate with people on the autism spectrum, thus creating an office culture in which autism is not only normal but advantageous to performing well.

This hybrid value system for employee recruitment and training emphasizes that health is not solely achieved through providing a set of medical interventions but rather through creating a society that respects and values all people. Hybrid value systems require that each partner change the way they do business, thus they provide an ideal framework for creating cultural shifts toward changemaker health. Through their partnership, SAP and Specialisterne are redefining autism as a strength — especially for a range of high-skilled analytical jobs — and helping to build a changemaker health society in which people on the autism spectrum are an essential and valued part of the workforce.

Align incentives

Another method for effective co-creation for changemaker health is to align incentives across sectors and stakeholders for the best interest of patients. Social entrepreneurs have identified and disrupted counterproductive incentive structures within current healthcare systems in order to further patient empowerment. For example, healthcare clinics that charge on a fee-for-service basis tend to receive more revenue when patients become ill and stay ill and less revenue when patients practice preventative measures that would reduce the need for costly medical interventions. Iora Health, for example, provides an alternative to the fee-for-service payment structure of healthcare by charging a monthly fee for patients at its primary care clinics across the U.S.A.

Another example can be seen within the pharmaceutical industry, in which companies often are not incentivized to pursue research into the prevention and treatment of rare diseases because the customer base for these interventions is relatively small. Instead, companies tend to focus research and development resources on blockbuster drugs appealing to a mass customer base. Yet, recent scientific discoveries in genomics are creating the prime conditions for the production of personalized medicine, making the development of individualized healthcare for smaller patient populations a viable commercial model. Social entrepreneurial organizations, such as Switzerland-based EspeRare, are bringing together various actors to collaborate in unconventional ways and align incentives for patient-centered care.

Founded by Caroline Kant, EspeRare drives the development of treatment options for rare diseases by realigning incentives. EspeRare does this by facilitating the recycling of previously developed drugs and exploring applications of those drugs for the purpose of rare disease treatment and prevention. EspeRare also functions as an unbiased broker between and coordinator of the various stakeholders within the drug discovery process, such as patient groups, nonprofits, biopharmaceutical companies, clinical researchers and regulatory bodies. By doing so, EspeRare offers a viable business model for the development of rare disease treatments to multiple stakeholders. The company’s current portfolio includes treatment options for duchenne muscular dystrophy in children and a fatal renal disease called focal segmental glomerulosclerosis, as well as others in the early phases of development.

By helping the various actors involved in the development of treatments break from their silos and co-create rare disease treatment options, EspeRare places patient outcomes at the center of a variety of healthcare actors. It creates a value chain in which all stakeholders are incentivised to cooperate for the development of treatments, even for those patients whom traditional systems have ignored due to a perceived lack of feasibility or profit.

Openly share scientific data

Open source sharing of data is another design principle used in successful co-creation partnerships that can help to scale changemaker health. There are a multitude of types of data that, if shared openly, have the potential to unleash new drug discoveries and innovations.

As Aled Edwards, biochemist and founder of the Structural Genomics Consortium, explained in an interview with Ashoka, the scientific community is often characterized by a spirit of competition and perceived resource scarcity. Individual scientists tend to compete for publication and funding by conducting their experiments in secret and patenting their findings, even if those findings might have the potential to unlock lifesaving treatments if they were more widely available across the scientific community. While in certain contexts competition can help to encourage innovation and creativity, within the scientific field it tends to inhibit collaboration, slow progress, create redundancies and work against a patient-centered healthcare system.

Competition can be particularly counterproductive within the scientific community because the individual building blocks of discovery that are needed to reach a major breakthrough — such as a vaccine for the Zika virus — require a multitude of micro discoveries that build on one another. For example, many disease treatments begin with understanding the structure of a specific protein. From there, scientists can begin to understand the role that protein plays in a disease, which in turn can lead to discoveries in disease treatment. Within the traditional discovery process, knowledge about a particular protein structure might be kept hidden or inaccessible to those who could use it to develop disease treatments. Biomedical laboratories might create redundancies by secretly working on the same protein, or one lab might spend years running an experiment that another lab has already determined leads to a dead end.

The systemic problem of competition and scarcity within the sciences drives the healthcare industry away from being patient centered. By the nature of the current system, biomedical research institutions and academics are often forced to pursue research that is more likely to lead to funding, a publishable result, and acclaim rather than research that could immediately lead to disease treatment. Discoveries related to rare diseases and avenues of research that are niche or novel are particularly considered to be unpublishable.

The Structural Genomics Consortium (SGC) is creating systemic change within the scientific community by cultivating collaboration and open sharing of knowledge in order to facilitate more rapid innovations in the discovery of medical treatments. SGC is an international not-for-profit that creates public private partnerships to carry out scientific research into protein structures and other avenues of biomedical research. SGC then makes that research openly available to the scientific community. SGC carries out this work at its own laboratories as well as through an international consortium of open source partnerships for the discovery of disease interventions, including top players from the public, private and academic sectors.

SGC has found that non competitive co-creation partnerships lead to a more effective and efficient distribution of resources and allow for the rapid development of treatments. For example, a recent collaboration between the SGC lab in Oxford, a lab at Harvard, knowledge given by GlaxoSmithKline, and a patent by Mitsubishi resulted in major advancements in the scientific understanding of leukemia, all within just 20 months — a fraction of the time a discovery of this scale would have taken in the traditional model. This demonstrates how the open sharing of scientific data can facilitate co-creation partnerships that have the potential to expand changemaker health across society.

Pool Finances and Share Risks

Another essential ingredient to co-creation partnerships in the service of changemaker health is risk and resource sharing. For changemaker health to become the industry norm, health systems must serve even the patients whom might be seen as risky, which may include patients with rare diseases or stigmatized conditions. Specialisterne, EspeRare and the Structural Genomics Consortium all employ strategies of pooling finances and sharing risks across players.

Within the hybrid value system created by social enterprise Specialisterne and software company SAP, the potential risk of employing people who are often discriminated against in the workforce is shared by the two partners. SAP takes on the financial risk of hiring a new demographic of talent, and Specialisterne takes on the risk of recruiting and training this demographic.

EspeRare finds avenues for financing by pooling sources of funding from disparate sources such as patient groups, public grants and pro bono partnerships. By capturing the unique capabilities of each stakeholder — such as the strong ability for patient groups to use personal storytelling to inspire crowdfunding and academia’s relatively easy access to public grants — EspeRare taps into the collective power of all stakeholders for the benefit of patients with a rare disease. EspeRare reduces the investment required for pharmaceutical companies to pursue research into a new treatment by up to 75 percent.

SGC is unleashing research funding across different sectors (public, private and academic) by offering an independent financing pooling option to the members of its consortium. Under this approach, no single funding partner has more influence on scientific priorities than any other. By working together within the consortium rather than competing against one another, scientists working on similar or interrelated experiments are able to pool their financing and eliminate the wasted resources and redundancies of replicated efforts. Then, they are able to apply the money they save to new avenues of research.

Specialisterne, EspeRare and the Structural Genomics Consortium all demonstrate how co-creation partnerships involving resource pooling and risk-sharing can help to spread changemaker health by making it more financially viable for major players to invest in health care even for groups that are usually excluded.

Conclusion

Creating hybrid value systems, aligning incentives toward patient-centered outcomes, openly sharing scientific information and pooling finances and risk-sharing are all methods that social innovators use to pursue effective co-creation partnerships that scale patient empowerment across health systems. The use of these strategies within the work of social innovators highlights how even stakeholders who historically have no patient interaction at all, such as biomedical researchers, can make use of the unique quality of co-creation across sectors to orient healthcare systems toward changemaker health.

Ashoka is a global network of leading social entrepreneurs — individuals who tackle society’s complex social problems with scalable, innovative solutions. Launched in 2010 by Ashoka and the global healthcare company Boehringer Ingelheim, the Making More Health (MMH) initiative identifies, supports, and scales innovative, entrepreneurial solutions to global health challenges. To date, the MMH initiative has identified and supported 80 social entrepreneurs in the field of healthcare from across 47 countries. This article series synthesizes the emerging patterns and insights of the MMH network, as well as other social entrepreneurs working in healthcare, in order to explore the theme of changemaker health.