NGOs and the Valley of Death in the healthcare sector

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Master Thesis BA Strategic Innovation Management

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2 Abstract

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1. Introduction

The Valley of Death is described as the gap between research and commercialisation of marketable products or services in industries such as the healthcare sector (Ford et al, 2007, Hudson & Khazragui, 2013). This gap in the development process of a product can result from a lack of motivation or skills in scientific or commercial expertise (Markham et al, 2010) and a deficiency in available resources to fund innovation, which is caused by high uncertainty related to that innovation (Auerswald & Branscomb, 2003). Different parties are involved in the process of moving from research to commercialisation, and this dynamic makes goal alignment more difficult in the different stages. The various parties are shown in the model from Dooley and Kirk (2007) that has been adapted from Etzkowitz and Leydesdorff (2000). This model defines that close interaction and goal alignment between academics, industries and governments is needed to achieve successful innovation in the market. However, goal alignment between those different parties is not natural (Hudson & Khazragui, 2013), and this problem exists because every party focusses on their own expertise. Universities are focussed on delivering basic research, industries are focussed on the commercialisation of new technologies, and governments provide the funding that researchers need (Dooley & Kirk, 2007). Yet it is not possible to strictly divide the different parts because elements in the development process will be missed. The development process is seen as the steps that public or private entities follow to research products or services and translate those things into marketable elements. Between basic research and commercialisation, translational research occurs, in which the various parties fail to pay specific attention to what can cause the gap between research and commercialisation (Auerswald & Branscomb, 2003). Focussing on translational research will help connect research with the needs of the market.

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healthcare industry and governments. At the end of the investigation, suggestions are provided to NGOs about how they can bridge the Valley of Death in the healthcare sector and assist patients in receiving valuable treatments.

2. Literature review

The Valley of Death exists due to the misalignment of interests—the university’s scientific research interests vs. an industry’s commercial interests. Close collaboration between academics, governments and industries would be beneficial to transform research into successful innovations (Hudson & Khazragui, 2013). In addition, the involvement of end users in the translational stage of research has been proven to be effective in generating more useful innovations (Cornwall & Gaventa, 2001). In this chapter, the role of NGOs in the development process for a new product will be defined, followed by the social instruments used by NGOs.

2.1 The roles of NGOs

2.1.1 Intermediary role. Non-governmental organisations are able to involve themselves in supporting close collaborations between different parties by fulfilling an intermediary role. This means that NGOs can connect diverse sectors or organisations, including public and private entities, to reach alignment and to create collective benefits (Dalziel, 2010). In this way, an inter-organisational network will be created and supported. The intermediary supports the inward flow of knowledge (e.g. transferring specialised knowledge) (Bessant & Rush, 1995) and the outward movement of knowledge from local firms to different parties, which includes industry promotion (Human & Provan, 2000).

One important characteristic necessary to be a successful intermediary between various actors is the entity’s independence (Gellert, 1996) (Gilson et al, 1994). As an autonomous organisation, NGOs can have a non-partisan status, and that promotes greater acceptance by governments and communities (Gellert, 1996). Non-governmental organisations want to create collective benefits, and therefore, their importance does not lessen when close collaborations between different parties are reached (Banks, Hulme and Edwards, 2015). With the expertise of the NGOs in a particular field, their social purposes and their trusted positions, they can enable other parties to recognise common ground for mutually beneficial collaboration (Teegen, Doh, Vachani, 2004).

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to the ideals related to social welfare, NGOs achieve greater public trust than governments and private firms.

Non-governmental organisations promote the involvement of clients who have different interests, in the development process (Gellert, 1996). The proximity of the NGOs to a lot of clients can help offer more diversity in applications for the community, and in this way, NGOs are able to respond better to particular needs (Teegen et al, 2004). Non-governmental organisations contribute to building social awareness with different activities such as establishing codes, providing training to stay adaptive and innovative (Gellert, 1996) and supporting institutional settings to promote social welfare (Brown and Kalegaonkar, 2002).

2.2 Social instruments of NGOs

To fulfil the roles of acting as intermediaries and advocates, NGOs must utilise different social instruments. In this section the two most important social instruments, networking and special groups of users, are explained.

2.2.1 Networking. To fulfil the intermediary and advocacy roles, NGOs must create large inter-organisational networks (Dalziel, 2010) in which the organisation collaborates with different kinds of groups. As an intermediary. NGOs can connect different parties with each other in areas where the NGO is focussed on goal alignment, which is highly important for advocacy. Goal alignment in an NGO’s network is needed to achieve network sustainability, although not every collaboration between an NGO and its partners includes the same activities or has the same impacts. Broad diversity in the networks of NGOs, such as parties with scientific and commercial expertise, leads to the organisations having a better position as intermediaries because the connected parties have to complement each other to add value to the particular activities. (Dalziel, 2010). The different types of collaborations that NGOs can perform in their networks include the following: the provision of information and advice, the facilitation of promotion and influence, the nurturing of business or research linkages, and community and consensus building. The groups collaborate with governments, industries and academics. Below, each collaboration is explained and the advantages of these organisations for an NGO’s network is described.

Academics. Cooperation between academics and NGOs fosters mutual benefits such as strengthening evidence and accessing funding because academics can use their expertise in an applied manner with these collaborations. The two parties share the value of supporting a particular issue, although this is not enough for a successful collaboration (Aniekwe, Hayman & Mdee, 2012). The partnership faces some difficulties, which include differences in learning. Academics are focussed on identifying generalizable rules that lead to predictions, while NGOs try to solve specific problems in a particular setting (Roper, 2002). Another problem in the collaboration between NGOs and academics is the lack of transparency. Grant proposals are written and checked by academics, and even though NGOs are involved in the process after the design of the project is finalised, the groups do not have any input in the proposal when it is written by academics. This dynamic can weaken collaboration due to the inequality of the two parties, caused by more disagreements during the development process (Cottrell & Parpart, 2006). For an efficient collaboration between academics and NGOs, effective communication and open, transparent dialogues are required (Aniekwe et al, 2012).

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between governments and NGOs exist. For example, informal agreements between the two parties leads to the exchange of information or the sharing of certain activities. Another example of types of cooperation is the formal contractual agreement, which can result in the contribution of resources and the adoption of responsibilities (Gómez, 2004).

Cooperation between governments and NGOs are mutually dependent (Coston, 1998). Non-governmental organisations are financially dependent on governments, and that means that NGOs can be affected by the funding arrangements with governments (Batley, 2011). The NGOs that collaborate with governments try to influence public policies to reflect their intentions to help communities, and the organisations have to continually respond to changing policies and sources of funding. However, collaborating with governments gives NGO opportunities to influence the public policies and their sources of funding, which can be seen as a form of persuasive advocacy (Najam, 2000). This cooperation between the two parties is also beneficial for the government as NGOs can contribute skills that are lacking in governments. One example of such an advantage is the capacity to work with communities to discover user needs, and have professional expertise about the different research stages in the development process of products (Batley, 2011).

Industry. Collaboration between NGOs and private firms has several positives. For instance, both

parties want access to complementary resources, and companies have financial resources and technical expertise (Osborne & Gaebler, 1992). Meanwhile, NGOs have knowledge about what must be done in a particular field, and the groups also have a good reputation and legitimacy (Jamali, 2003) (Graf & Rothlauf, 2011). In particular, reputation status in terms of environment and social circumstances has become more important over the years. With those complementing resources, the parties hope to reach a sustainable competitive advantage with their collaborations.

A second benefit of the collaboration between NGOs and firms is the acceleration of the development process for the entry of a product or service to existing or new markets (Graf & Rothlauf, 2011). Firms have to adapt their business models to local market characteristics regarding the economy, culture and institutions, but companies often lack some resources that are needed. Cooperating with a local NGO can lead to more tangible resources and intangible knowledge that add economic and social value by recombining industries existing valuable resources or by developing new valuable resources. With this collaboration, both parties contribute complementary resources to the different stages in the value chain to develop a new product or service (Dahan, Doh, Oetzel & Yaziji, 2009) (Jamali & Keshishian, 2008).

Finally, the commitment to corporate social responsibility (CSR) by businesses is seen as an important reason for firms to seek collaboration with NGOs. Non-governmental organisations have the status of being socially responsible, and firms hope to achieve CSR when they collaborate with NGOs (den Hond, de Bakker, Doh, 2015). Firms will approach NGOs because companies are responsible in the present era for considering the interests of different stakeholders, which is seen as an important aspect in CSR programmes (Huijstee, 2010).

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compositions. For example, a broad group of users may be asked to give feedback via a survey. In other instances, smaller groups of users are involved as trainers or provide input for other research (Tse, 2012). Lastly, NGOs have to develop partnerships with the ‘user groups’, especially with excluded groups, to give them a better position in managing society (Brett, 2003).

2.3 Conclusion

The literature section showed us that a diverse network is highly important for the acceleration of the development process. All parties involved in NGO networks experience mutual benefits with collaboration, although it is not realistic that every collaboration is easily introduced. One conspicuous gap is the collaboration between different NGOs. Another gap are the barriers to cooperation between the different parties and NGOs. Barriers are given to cooperation between academics and NGOs. However, there are no identified barriers for collaboration between NGOs and governments or NGOs and private industry.

3. Methodology

The Valley of Death exists in the process of discovering new medicines in the healthcare sector, and NGOs are presently one of the most important sources of funding in the Dutch healthcare sector. However, they are able to play more roles than this one in the healthcare sector. Due to the high amount of activism performed by NGOs in the Netherlands, it useful to investigate the roles and social instruments of NGOs in bridging the country’s Valley of Death. To accomplish this task, a qualitative research approach was used. Qualitative research was the best approach for this research because in-depth information was needed, and when performed, the underlying thoughts of NGOs could become apparent to help answer the research question (Smith, 2015). Not all NGOs focus on the same activities in the development process, which consists of fundamental, translational and clinical research. According to Gouwenberg et al. (2015), different activities are related to the size of NGOs, and so various groups of different sizes were investigated to get a clear overview of specific roles performed by the diverse NGOs in relation to the Valley of Death.

3.1 Data collection

The size and activities of NGOs are related to each other, which influenced the decision to research small, medium and large NGOs on the Internet. The basis for small NGOs was having less than €5 million in total income. For medium NGOs, total income was between the €5 and €20 million, and for large NGOs, the total income was greater than €20 million (GDN, 2016). The first criteria to decide if the NGOs were appropriate for this research was that the groups were involved in both fundamental and translational research. It could be assumed that NGOs that were involved in both processes had a good view about the whole development process. In addition, diversity in activities between the NGOs was conducive to measuring the different activities of NGOs to bridge the Valley of Death. Those activities were searched for in policy documents and annual reports, which were available on the Internet.

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meeting took place face-to-face with two NGOs at the same time, while all the other interviews were done individually. After a few interviews, it was decided to plan an interview with a governmental organisation with a special programme for translational research that a number of the interviewed NGOs were participating in. This interview was conducted over telephone. Table 1 features the 10 NGOs mentioned, although some NGOs preferred to stay anonymous.

The selected NGOs were interviewed in a semi-structured way, which meant that the interviews consisted of several key questions to allow the interviewer or interviewee to diverge and continue with an idea or response in more detail (Gill, 2008). The interview protocol with key questions was the same for all interviews, except for the governmental organisation. The main goal of the interviews with the NGOs was to gain deeper knowledge about their activities, including their successes and difficulties in bridging the Valley of Death in the healthcare sector. The mail goal of the interview with the governmental organisation was to gain deeper knowledge about the relationship between the government and NGOs. Interviews lasted between 45 minutes to 90 minutes, with an average of 60 minutes. Before every interview, participants were asked for permission to record the conversation, and each interviewee gave permission. After analysing the 10 interviews with the NGOs and the government organisation, it was concluded that a saturation of knowledge took place, and therefore, no other NGOs for this research were added. At the end of all the interviews the NGOs were asked if they are willing to participate in a second contact via mail if new insights emerged. After analysing all the reports of the interviews, six NGOs were contacted to ask a few questions about new insights or to reach more clarity. Triangulation in this qualitative research increased the credibility and validity of the interviews (Eisenhardt, 1989), and therefore, more data were collected than only the results of the interviews. Some important documents were sent by the NGOs after the interviews, and the additional information was collected by analysing the annual reports.

Table 1: Interviewed NGOs. Large sized NGO Aids Fonds

Dutch Cancer Society (DCS)

KNCV Tuberculosis Foundation (KNCV) Dutch Kidney Foundation

NGO 1 NGO 2

Middle sized NGO Dutch Diabetes Foundation NGO 3

NGO 4 Small sized NGO NGO 5

3.2 Data analysis

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and selective coding combined for the roles and the social instruments. The different categories and subcategories are explained in the result section.

Figure 1: Axial and selective coding combined for the roles of NGOs.

Figure 2: Axial and selective coding combined for the social instruments of the NGOs.

4. Results

4.1 Introduction

This chapter examines the answer to the research question. The roles and social instruments are interconnected and will be clarified in this result section. The reports from the interviews showed that NGOs positioned themselves in varying roles and could use diverse social instruments to bridge the Valley of Death. However, before explaining the roles and social instruments, it must be clear how the interviewed NGOs interpreted the Valley of Death in the healthcare sector. Therefore, the results begin with an overview of the interpretations of the Valley of Death given by the interviewed NGOs. Afterward, the different roles of the NGOs are explained, which are then followed by the different social instruments that have been used by the NGOs to bridge the Valley of Death.

4.2 The perceptions of NGOs regarding the Valley of Death in the healthcare sector

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However, NGOs gave different main causes for this gap in the development process. Various parties such as universities and the healthcare industry must be involved in the lab-to-patient process, which makes the development process more difficult. The ways of thinking for researchers and companies is different and causes misalignment between the two parties. Researchers focus on their own investigations, which can lead to a good outcome in theory, but they do not think about using the application in practice.

‘The translation, from laboratory to what is needed for the clinic, is not always matching with each other. If you develop something in your laboratory that means the patient has to get an injection in their knee every week, that will not be achievable in practice’. – NGO 1

‘Researchers are not educated to think in this way, so I think that everyone must be more aware about the translation’. – NGO 5

Each stage of the development process, from fundamental to clinical research, needs additional expertise. Non-governmental organisations do not have all the necessary expertise for each stage, and other parties are therefore involved to successfully accomplish each stages of development. Researchers do not have the skills or interest to bring applications to the market because the process of translation takes considerable time and money. Moreover, companies do not have the knowledge to do research, although they have the NGOs to bring applications to the market. However, the problem is that companies do not want to invest too early in new medicines or treatments because there is still a risk of failure, which means that there is uncertainty about whether something becomes a medicine. The healthcare industry or other companies will sometimes wait until a start-up begins to develop an application, and at that moment, the company will then buy the whole start-up. Yet not all projects will be picked up, and therefore projects that have the potential to result in a medical application do not progress and no further research is done.

‘The interest of the researcher is doing research, and he is very good at that. However, to bring something to market, to valorise, is really different’. – NGO 2

4.3 The role of NGOs in bridging the Valley of Death in the healthcare sector

The roles of the NGOs must give some clarity about the position of the NGOs to bridge the Valley of Death. First, the intermediary role will be examined and instances in which NGOs can take on that position will be described. Second, the advocacy role will be explained.

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credibility to operate for the well-being of society and to get the applications on the market as soon as possible.

Encouraging connections between researchers and firms and researchers and patients was most often mentioned by the interviewed NGOs. All these connections had the same goal: collaborations. The majority of the interviewed NGOs saw themselves as facilitators of these partnerships. However, the way of facilitating was different among the interviewed NGOs. The Dutch Cancer Society (DCS) mentioned that they facilitated collaborations between firms and researchers to establish financial support, but they expected the researcher to initiate the search for a company. In contrast to the DCS, NGO 4 actively searched for new firms to enable direct collaboration between the NGO and the business. However, the approach to connecting researchers and patients was consistent between the interviewed NGOs. Most NGOs facilitated collaborations between researchers and the patients and had the condition that patients had to be involved in the development process. The NGOs were responsible for streamlining cooperation between the different parties.

‘Actually you prefer a connecting role, that you have contacts and bring ideas together. You need to arrange your network and become an active networker’. – NGO 3

Consortia. The intermediary role of most large interviewed NGOs and one mid-sized interviewed NGO was used to encourage various parties to establish a consortium. It was also possible that the NGOs themselves participated in this consortium. The large interviewed NGO 2 mentioned that they were able to connect different consortia with each other and to share results and collaborate in a defined field. In this way, the NGO tried to accelerate the process from achieved results in one consortium to reusing those results in another consortium. Non-governmental organisation 4 mentioned that they encouraged the parties involved in the consortium to contact the patients’ association to emphasise the needs of the patients.

International efforts. KNCV Tuberculosis Foundation (KNCV) and small NGO 5 played the intermediary

role in an international context. KNCV Tuberculosis Foundation mentioned that it was important to have partners abroad before entering a new country. The diversity of knowledge from KNCV led to an intermediary role between the different partners abroad, as well as for Dutch universities and local partners in foreign locations. Experiences and knowledge must be shared and distributed over the world. Non-governmental organisation 5 used their intermediary role to connect the specialised centre, where the academics in their specific field are active, to an international federation. With this connection they worked towards international guidelines for patients in that specific field.

Process experts. All the interviewed NGOs were unable to do research themselves, but they had deep knowledge about the development process and could therefore be seen as process experts. As such, the NGOs were able to streamline the connections between different stakeholders. Process experts encouraging the optimal translation of achieved results is the most efficient way and can be seen as an intermediary role. As an intermediary, the interviewed NGOs could be seen as the hubs and the different parties as spokes in a wheel, and the main goal of the NGOs was to connect the spokes with each other to reach an optimised development process.

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4.3.2 Advocacy role. Non-governmental organisations strive for additionality of medicines and treatments for patients. This can be done in different ways. The interviewed NGOs mentioned that they supported the projects that gave additionality to the patient, they supported projects that had been initiated by researchers, encouraged the repurposing of applications, and created awareness about diseases. The additionality for the patient and the three aspects will be explained, which will be followed by a discussion about how an NGO’s most important characteristic—its reliable name—could influence other parties to become involved in the development process.

Additionality for the patient. With the advocacy role, NGOs are focussed on the well-being of patients, and they take care of the interests of patients. All the interviewed NGOs made increased efforts for patients who were not getting the attention they needed and deserved. Non-governmental organisations in the healthcare sector initiate this process to make different parties more aware about neglected groups, which are often patients with rare diseases. The firms that are needed to translate applications to the market are not focussed solely on the well-being of the patients because for them, the medicine or treatment must be profitable. When the medicine or treatment is not profitable for firms, they do not invest in the application. All the interviewed NGOs focussed on the healthcare sector, and supporting rare diseases was seen as of greater importance than supporting the more common diseases. All the interviewed NGOs mentioned that the additionality of the patients was the most significant condition for entering a project. When the industry had not been interested in investing applications, these NGOs would support the project. Although the NGOs did not have the finances to translate the product to the market, each organisation used their intermediary role to gain access to more finances. Half of the interviewed NGOs mentioned that they were able to initiate a consortium to achieve a successful development process when firms were not interested in investing in an application. Consortia initiated by NGOs have the influence on government support because the organisations require the focus of patients, which is appreciated by the government.

‘We are looking for opportunities to be involved in projects without a revenue model, but a little money or lots of money from us has a lot of added value for people with diabetes’. – The Dutch Diabetes Foundation

The independent characteristic of NGOs was mentioned as important for the intermediary role, but autonomy was also beneficial for NGOs’ advocacy role. The independence of NGOs gives them more flexibility and freedom to invest in research and collaborations compared to other parties, which leads to more creativity in supporting research. The majority of the NGOs not only support standard science, but small, creative ideas also get support from NGOs when they give additionality to the patient. Although the majority of NGOs supported creative ideas, NGO 2 required the researchers to focus on important, large themes. This NGO believed that the large themes, which are related to common diseases, included the most valuable needs of patients.

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Repurposing. Non-governmental organisation 3 used their advocacy role in a specific context, namely the repurposing of existing medicines. This meant that the NGO had been encouraging researchers to investigate if an existing medicine could also be used as a solution for another problem. Normally the process from preclinical to clinical trials is very expensive, but existing medicines have been already tested for safety. The only thing that researchers had to investigate was if the medicines worked for another group of patients. The NGO supported this research because it was a relatively inexpensive process that could serve a considerable number of patients.

Creating awareness. KNCV Tuberculosis Foundation had another form of implementation related to the advocacy role in comparison to the other NGOs. The most important reason was that tuberculosis is handled very well in the Netherlands, and KNCV was therefore focussing on dispersing their knowledge to prevent the spread of the infection abroad and to optimise treatment results. However, it has been difficult for the NGO to find patients because tuberculosis involves significant stigma. KNCV Tuberculosis Foundation has been trying to create more awareness about the disease to serve patients in foreign countries.

Reliable name. The reliable name of all the interviewed NGOs in the healthcare sector was another important characteristic that they used to influence other parties. The name of the NGOs can convince outside actors to become involved in the development process because those parties believe that research would be thorough when a NGO is already involved. In addition, outside parties will ask to partner with NGOs. The influence of NGOs becomes visible in the agenda of other actors where those actors will invest in an early stage in the development of an invention. In contrast to influencing agendas, NGOs are also able to be set agendas to develop projects with groups such as the Dutch collaboration group of NGOs in the healthcare sector, called SGF. The reliable name of the NGOs can influence the companies to become involved in the development process of medicines or treatments and to invest in consortia where the NGO is involved. Two NGOs mentioned that they were able to influence other parties to invest in a project without being involved in the project themselves. The Dutch Diabetes Foundation and the Dutch Kidney Foundation wrote letters of support for researchers when they wanted to encourage a project but were not able to finance the venture. In this way, they influenced other parties with their reliable name to support the development of a project.

‘Big companies are involved in consortia. They invest millions in that research. They said to researchers, it is an advantage when the health fund is a co-financer, they are reliable so it will we right’. – NGO 2 ‘I think it is sometimes, a kind of social corporate social responsibility’. – NGO 4

4.4 Social instruments used by NGOs to bridge the Valley of Death in the healthcare

sector

The interviewed NGOs had two important social instruments that they used intensively to manage the development process of medicines and treatments in the healthcare sector. All the interviewed NGOs had diverse networks consisting of the Dutch and sometimes the foreign government, the healthcare industry, academics and other NGOs in the healthcare sector. The second social instrument of the interviewed NGOs were groups of end users that were involved in the development process. First, networks with different collaborations will be explained, and the end users as a social instrument will then be elaborated upon.

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own. Non-governmental organisations do not conduct research by themselves, and they therefore have networks of academic researchers. Collaboration with the government is especially important to subsidise the development process, and when the research process is finished, the industry has to invest to get the application on the market. The different NGOs in the healthcare sector collaborate with each other to share information about the development process and to share the experiences in their networks. In this section, NGO networks will be elaborated upon. Non-governmental organisations stimulate their network partners to achieve the successful development process in the healthcare sector.

Academics. One group that is an important part of NGO networks is academic researchers. Scientific research was not done by the employees of the interviewed NGOs but was conducted by academic researchers, the majority of which were based in the Netherlands. Most of the requests came from universities, but these institutions differed in their focus on fundamental and translational research. All the interviewed NGOs wrote their own programme texts, which included the goals of the NGOs and conditions of the research application in order to respond to requests about who would fit with the NGO. The collaboration between academics and the NGOs faced some difficulties because the researchers and NGOs did not have the same goals. The Dutch Kidney Foundation mentioned that researchers were often focussed on publication and their own careers instead of getting applications to the market. Moreover, the Dutch Diabetes Foundation noted that researchers had their own specialisations and would stop when that part of the research, which was often only fundamental research, was done.

However, this type of research was not always considered in relation to the practical uses for patients, and therefore, no translational research and clinical research took place. All the interviewed NGOs encouraged researchers to create awareness regarding the end result, namely moving applications to the market to be used by patients. To create more awareness by researchers about applications on the market and to increase the focus on patients, the NGOs expected faster and more translational research in the development process. The DCS encouraged this cognisance by asking researchers early in the development process where they saw themselves in the process and what they thought about regarding the next steps for getting applications to patients.

‘For the researchers, it means they have to think differently. Thinking about their own research preferences or results is not acceptable. They must think of the needs for the patients. That is another way of thinking’. – NGO 2

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report. However, it is conspicuous that during the research process, especially during the interim reports, encouragement to think about the application is less.

Not all the interviewed NGOs were encouraging awareness about the implementation of research in the same way. One mid-sized NGO mentioned that they set deadlines for their different projects. Those deadlines meant that the NGO was striving for a clinically relevant result for some projects within five years and for some smaller projects within two years. The DCS was encouraging awareness about implementation with a special programme for researchers called Programme Research and Implementation, which was established in 2016. Researchers can submit their requests, and the DCS would help them with specific advice about how to accelerate the development process towards implementation.

Two of the large NGOs mentioned that Technology Transfer Offices (TTOs) were important to encourage researchers to consider implementation. The strongest TTOs are located at universities which have a strong market focus. A TTO creates awareness for researchers about intellectual property, and they can therefore play a role in pushing an innovation to the market.

The stimulation of information transfer. For half of the interviewed NGOs, open access publication was a point of attention. Most large NGOs are involved in open access publication. However, there are different opinions about the advantages of open access publication. The large NGO 2 considered open access publication as very efficient because it could help other researchers if some data are reusable. This collaboration between researchers can accelerate the research process. The NGO mentioned that both positive and negative results must be published via open access. In this way, NGOs can avoid researchers starting the same research that would again deliver negative results. However, the Dutch Kidney Foundation encountered some difficulties with open access publication. They believed that a considerable amount of published data were not comparable because of the external conditions of research. The NGO believed that it made more sense to spend their time on research than on this publication process. The small NGO 5 mentioned that open access was important for them, but that it was not imperative for them to participate because they did not currently have the finances available.

‘We as health fund demand now: researchers, all publications financed by us have to be published open access’. – NGO 1

The stimulation of talent for development researchers. Half of the interviewed NGOs mentioned that they encouraged career opportunities for new, talented researchers. Non-governmental organisations and other public groups will add subsidies, especially for promising researchers. The Dutch Kidney Foundation mentioned that they encouraged career development because they did not want to lose focus on research and they felt a responsibility to keep their field alive. European countries other than the Netherlands offer those rounds for researchers at all stages of their careers. The amount of money in Europe is much higher compared to the Netherlands and the competition is much more substantial. However, NGO 2 mentioned that they encouraged talented researchers to submit their fellowships there.

NGOs. Another group that is critical to NGO networking is other NGOs with similar interests. All the

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Umbrella organisation SGF. All the interviewed NGOs were connected to the umbrella organisation

SGF. This collaboration includes 21 NGOs in the healthcare sector, and each of the NGOs in the SGF want to pool their financial and intellectual powers to resolve collective problems. The SGF is able to represent the goals of the NGOs in the healthcare sector with the Dutch government and to direct more money to the projects of the NGOs. The organisation is seen as a general point of contact for external parties who are searching for interaction with more NGOs. One of the subsidy rounds given by the SGF is disease exceeded. This means that a project can be usable for more NGOs, because it has an impact on several diseases. The SGF has special workgroups where different NGOs are involved to think about the achievements of exceeded programmes for the various organisations.

All the different NGOs involved with the SGF are seen as important, but that does not mean that collaboration is easier. Every NGO involved with the SGF has their own finances and conditions, which can slow down the collaboration process. Two interviewed NGOs mentioned that it was easier when there were uniform agreements about the conditions of collaborations between companies and researchers. The SGF itself makes guidelines for the NGOs to enable an easier collaboration process for the researchers and NGOs. One example of the SGF guidelines are those for patient participation. Under such circumstances of high consistency between NGOs, researchers are better informed about the expectations of the NGOs. The small NGO 5 mentioned that they are learning a considerable amount from other NGOs about collaboration, especially regarding the translation process.

‘There is no need to keep reinventing the wheel, we can learn from others.’ – NGO 5

Not only are NGOs in the healthcare sector collaborating with each other via the SGF, partnerships also exist between some NGOs individually. There are consortia where more NGOs are involved and collaborate with each other. Together, they create a team with different researchers and research groups. Due to the flexibility of the NGOs, it is possible to connect new groups. This flexibility leads to a more efficient translation in the development process.

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Government. Another group that is an important part of NGO networks is the government. Since 2008,

the Dutch government has been an important funder and supporter of translational research for all the interviewed NGOs. The Health Council identified a gap in financing the clinical stage of research and gave advice to the government about funding translational research. Non-governmental organisation 1 mentioned that NGOs were a forgotten partner for the government until 2008, even though the groups did a significant amount of research. When the government realised the NGOs had a great deal of value for the translation of applications to the market, the Dutch governmental organisation for healthcare research and innovations (ZonMw) started to finance translational research. There was a special programme introduced to support translational research called the programme translation research (PTO). This translational research was seen as the stage of moving research from the lab to clinical work. This programme was introduced by the organisation ZonMw, which currently has two clients—the Dutch Ministry of Public Health, Welfare and Sport (VWS) and the Dutch Organisation for Scientific Research. These clients provide financing for the PTO. ZonMw has a principal/contractor role because the organisation is also able to give the VWS advice about gaps in the healthcare sector. ZonMw is only financing clinical stage I and II studies, in which safety is being tested. In stage III, there are companies involved, and it is not allowed for ZonMw to finance this stage with government aid.

Another government group that has been involved in financing research has been Health Holland, which is the executive body of Topsector Life Sciences and Health, was established to facilitate connections between researchers and companies and is involved in the subsidy rounds of PTO. The subsidy of Health Holland is called the public-private partnership allowance. In this collaboration, the government, researchers and healthcare industries are involved. Health Holland helps NGOs find companies to collaborate with by organising network events. This subsidy is distributed by the Ministry of Economic Affairs and reaches the researchers via Health Holland. By using this subsidy to support collaboration between companies and researchers early in the development process, the government encourages successful developments that will lead to applications getting to the market. In this collaboration, it is important for NGOs to insist on their goal that applications reach the patients because the companies are more focussed on profits for the product. Since 2014, ZonMw and NGOs have been working together to develop research rounds for the PTO. This means that the NGOs have had a great deal of influence in the development of different projects in the PTO, and together they have been able find the best projects. With the collaboration between NGOs and ZonMw, it has been possible for both parties to double the amount of money available to finance breakthrough projects. ‘It is a win-win situation, VWS wants products to bridge the Valley of Death, we as NGO have the same goal. By collaborating with each other we can double the amount of money.’ – Marein de Jong, policy officer scientific research, Aids Fonds.

ZonMw wants to spend more money on their programme translational research, and they are thus convincing VWS to increase funding. In addition to ZonMw trying to influence the government, three of the interviewed NGOs mentioned that they have attempted to influence the Dutch and European governments to obtain more money to achieve their goal of getting applications to the patients. ZonMw and the NGOs are aware of the Valley of Death, but the government must become convinced about the importance.

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cooperation, an NGO can learn from the experiences of Applied Engineering and Sciences with the companies.

Industry. Another group that is critical to NGO networking is the healthcare industry. All the

interviewed NGOs described the collaboration with companies as difficult. A few large NGOs were already taking actions to address the problem. The majority of the interviewed NGOs mentioned that they encouraged researchers to find companies to collaborate with, but the groups did not directly cooperate with companies. However, this process will be changing for a few of the interviewed NGOS. Collaboration between researchers and companies is needed to get applications to the market. Being able to connect companies and researchers with each other is a goal for most NGOs, but several of the interviewed NGOs have had too little manpower and knowledge to facilitate connections between companies and researchers. This means that the responsibility for finding a company has belonged to the researchers themselves, and both the companies and researchers have been sceptical about potential collaborations. The researchers have been afraid that the company will steal an idea, and the companies have seen it as a risk to join a development process in the translational stage without being sure of a successful outcome.

However, collaborations between researchers and companies is considered easier in consortia. According to three NGOs, the characteristic of NGOs as societal organisations helped influence companies to become involved in consortia. The companies considered the involvement of consortia to be part of CSR.

The process of collaboration between NGOs and companies is changing. At the time of the interview, large NGO 2 had a direct collaboration with a company, where both parties had experienced the partnership as very useful. The role of the NGO has been to find good researchers to connect them with projects initiated by a company. This NGO has wanted to encourage direct collaboration with companies, and therefore, one of the solutions to encourage cooperation between researchers and companies was to hire a policy adviser to get in contact with different companies to arrange partnerships.

Two other large NGOs provided additional solutions to encourage collaboration between the various parties. Large NGO 1 mentioned that they searched for start-ups that were in the translational and clinical research process or encouraged researchers to establish a start-up. The NGO and also sometimes universities had offered finances to establish a start-up. In addition to funding start-ups, NGO 1 has provided monies to existing companies that were interested in moving applications to the market. Non-governmental organisation 1 has had an important role for companies who have been doubtful about investing in an application. The NGO has provided advice to a company about the decision to invest in an application by providing analysis of scientific data and insights about the feasibility of getting the application to the market.

Two of the large interviewed NGOs were taking action to establish an investment foundation with several other NGOs in the healthcare sector. With this investment foundation, the NGOs wanted to finance start-ups that can serve several patient groups when their innovation are implemented in the market.

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The instrument ‘end users’ can be divided in three different groups: the ‘users committee’, the social advisory board and patient associations.

Users committees. Users committees facilitate the movement of applications from the lab to the market, which is an important component of the Valley of Death. Every project that is partly financed by the programme translational research of ZonMw is required to build its own ‘users committee’. Researchers have to compose this committee, which consists of members who will use the results of the project, including patients, doctors, nurses and companies. The NGOs have to approve the composition of the ‘users committee’ to ensure that the right disciplines are represented. The ‘users committee’ is seen as one of the instruments NGOs use to make researchers aware about considering the needs of patients and the market. Non-governmental organisation 1 mentioned that they participated in the ‘users committee’ to encourage goal alignment between all parties. Non-governmental organisation 2 noted that they were present at the meetings and acted as a contact. When the ‘users committee’ do not function well, the NGO advises researchers about any shortcomings.

The ‘users committee’ has already had positive influences on researchers and projects. For researchers, the expertise of the ‘users committee’ has often been seen as highly useful for regulations and also because it has accelerated the development process. Committees have given solutions for the problem of including of patients. The lack of inclusion is seen as one of the bottlenecks in the development process with human research. With the establishment of the ‘users committee’, patients are already involved, and is it easier to achieve the inclusion. However, for KNCV, the involvement of patients still quite difficult because the disease has a stigma. Patients feel ashamed, and therefore, it is challenging to get NGOs to them.

Social advisory boards. Two of the interviewed NGOs mentioned the value of social advisory boards

that facilitate the movement of applications from the lab to the market. The board consists of people affected by or associated with a disease, including patients, nurses and doctors. The social advisory board is able to judge the project on their social relevance. Like the scientific advisory board, the social advisory board has had an important influence on approving requests of the projects.

Patient associations. All the interviewed NGOs mentioned that patient participation is highly important in the development process of medicines and treatments to bridge the Valley of Death. A few NGOs mentioned that several members of patient associations have been involved in the three levels of the development process. Patients have been educated by associations to give advice about the topic, to help establish priorities and to assist with modifications during projects, and the patients have been allowed to evaluate the end results. The involvement of patients during the entire development period has led to an alignment between the needs of patients and the projects of the researchers. In this way, patients have been able to indicate if there appeared to be a misalignment between the project and the needs of the patients.

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5. Discussion

In this research, the roles and social instruments of NGOs have been investigated to get a better understanding about the possibility of bridging the Valley of Death in the healthcare sector. In this chapter, the research question will be answered. Thereafter, the results will be discussed and related to the existing literature. Not all the interviewed NGOs implemented their roles and social instruments in the same way. Therefore, the most interesting differences between the NGOs will be discussed in this section. Afterwards, the implications will be discussed, which will then be followed by examining the study’s limitations and the possibilities for future research.

In this research, the question: Which roles and social instruments can NGOs use to bridge the Valley of Death in the healthcare sector? is investigated. The interviewed NGOs mentioned two important roles: the intermediary role and the advocacy role. NGO’s networks and their end users groups were seen as the most important social instruments.

5.1 NGO in general vs. NGOs in healthcare sector

Comparing the literature with the results, there are some conspicuous differences between NGOs in general and NGOs in the healthcare sector. In the literature, it has been mentioned that NGOs do not have any influence on the contents of proposals written by researchers (Cottrell & Parpart, 2006). However, the majority of the interviewed NGOs noted that they wrote programme texts by themselves, in which the goals and the conditions of research applications were described. This means that the NGOs in the healthcare sector have had influence on the requests they receive, which leads to more potential of applications on the market.

In the literature, nothing was written about the collaboration between NGOs. However, the results showed that this collaboration was very important for the NGOs in the healthcare sector. The NGOs could gather their power financially and intellectually to have greater influence on the Dutch government. The research indicated that NGOs use umbrella and sister organisations to build networks than can help bridge the Valley of Death and move lab findings to patients.

The collaboration between industries and NGOs in general is not seen as very challenging, but cooperation between companies and NGOs in the healthcare sector was much more difficult. In the literature, it has been mentioned the collaboration leads to the access of complementary assets for both parties, and that accelerates the development process of products (Jamali & Keshishian, 2008). Yet the companies and researchers in the healthcare sector were both sceptical about collaborations. Researchers were afraid that the company would steal their ideas when they were early in the development process. The companies considered involvement in translational research as a high risk because successfully moving an application to the market was not certain. This difficult collaboration is seen as one of the causes of the Valley of Death.

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5.2 Differences between the NGOs in the healthcare sector

Not all the interviewed NGOs implemented their roles and social instruments in the same way. The implementation of the intermediary role between companies and researchers was done differently by the interviewed NGOs. The majority of the NGOs did not have direct collaborations with companies, which made it more difficult to connect the various parties. The NGOs facilitated collaboration, but the initiative to search for companies remained with the researchers. Starting more direct collaborations between the companies and NGOs was in development, and a few NGOs have already become active in searching for direct collaborations with companies. One large NGO had experienced a beneficial, direct collaboration, and a new policy adviser was therefore hired to search for more direct collaborations with companies. To encourage the cooperation between researchers and companies, one large NGO was providing funding to existing start-ups and was also encouraging researchers to establish start-ups to move applications to the market.

The additionality for the patients was the most important condition for beginning a project. However, some of the interviewed NGOs had another opinion about the additional value of an application. The majority of the NGOs believed that small ideas could create enough additional value for patients to support the projects. One large NGO believed that large themes, which are related to common diseases, included the most valuable needs for the patients, and this NGO was consequently focussing only on projects which have a large impact on many patients.

All the interviewed NGOs were creating awareness by the researchers to consider the end results of their projects, which was getting the application to patients. Most of the interviewed NGOs were in conversations with researchers about the steps between translational and clinical research during the whole development process. Due to the transparency between NGOs and researchers, the organisations were able to help them when other disciplines needed to be involved in order to accelerate the development process and bridge the Valley of Death. However, the small NGO 5 mentioned that they only talked with researchers about applications at the beginning and end of projects. During the interim reports on projects, researchers were less encouraged to consider applications.

Open access publication was an important topic for the NGOs in the healthcare sector, because it accelerates the stages of the development process what could help to bridge the Valley of Death. Most of the large NGOs established it as imperative to researchers to publish open access. However, not all the large NGOs had the same opinion about the efficiency of open access publications. Some believed it led to an acceleration of research process because researchers could reuse data. However, another NGO believed that significant amount of data was not comparable due to the external conditions of research. The small NGO 5 mentioned they did establish it as imperative to participate in this process because it takes a great deal of time for researchers and a considerable amount money for the NGOs. Collaboration between NGOs in the Netherlands and their sister organisations abroad differed in intensity. Half of the NGOs mentioned that collaborations with foreign sister organisations was seen as highly useful because they had more influence together and could develop international guidelines in their fields, which helps in bridging the Valley of Death. For other NGOs, collaboration consisted of minimal contact with their sister organisations, which essentially included of solely sharing some publications.

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has been to share the experiences and knowledge acquired in the Netherlands across the globe to prevent the dispersion of the infection in other countries. The social instrument of user involvement was very difficult for KNCV because patients feel ashamed and have been difficult to find.

Overall, the results of this research have shown that the intermediary role and advocacy role and the use of networks and the involvement of users can have influence in bridging the Valley of Death in the healthcare sector. Each NGO has used their roles and social instruments in different ways, and the total amount of money available to the NGOs has played an important role. The large NGOs have been more innovative in finding solutions to achieve a successful development process that ends with moving an application on the market in comparison to the NGOs with less available funding. However, the smaller NGOs can learn a great deal from the experiences of the larger NGOs via the collaboration taking place with the SGF.

5.3 Implications

In this section, implications are given to the NGOs to bridge the Valley of Death in the development process. Non-governmental organisations are important advocates for patients with both general and rare diseases. To get applications on the market for those patients, the NGOs have to strive for goal alignment between the different parties involved in the development process. Non-governmental organisations must create awareness among researchers to consider applications during the development process, and the NGOs have to influence companies to become involved in the early stages of the development process. When the parties collaborate with each other in the initial phases of the development process, the investment by companies in medicines or treatments is not considered as highly risky. However, when it is still difficult to involve existing companies, the NGOs have to consider financing start-ups or encouraging researchers to build their own start-ups that would be partly funded by the NGO. Non-governmental organisations have to require the involvement of end users during the development process. When the end users have influence in the development process of the project, it is certain that the project has potential on the market. Pursuing these activities will help bridge the Valley of Death because all parties that are needed to get an application to the market are involved in the development process and strive for applications to the patients.

5.4 Limitations

Several limitations of this research should be taken into account. First, this research was based on 10 interviews with Dutch NGOs and one governmental organisation. Although this amount of interviews provides a good interpretation of the roles and social instruments of Dutch NGOs in the healthcare sector, it is not certain that NGOs in the healthcare sectors of other countries would have the same roles and social instruments. Second, only one NGO answered the additional questions that were sent by mail, which means that some details of the results are missing. Third, only one governmental organisation was interviewed, and that could have resulted in findings that were biased toward the NGOs.

5.5 Future research

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