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Non-profit associations for medical research: the boom of 2020

non-profit medical research

The pandemic has produced a profound health, economic, and social crisis, but it is also offering the opportunity to transform the way research is conducted and shared, accelerating those processes through which it will be increasingly possible to make science more open, efficient, and collaborative. In this exceptional situation, the activity of nonprofit medical research institutions stands out within the Third Sector, and they are playing a fundamental part in providing the resources necessary to achieve treatment goals.  

In this post, we will explain the reasons for the boom that has resulted in investments in non-profit medical research associations during this year, highlighting the main trends that the diffusion of COVID-19 has triggered, strengthened, and radicalized in the field of science in general and the biomedical sector, specifically. 

 

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Non-profit medical research institutes at the center of a cultural change 

 This crisis is providing a lesson that we hope will not be forgotten in the years to come: rather than from a no-holds-barred competition, the most effective answers to the emergency are coming from global collaboration among the protagonists of research. It seems clear that efficiency can be gained only through a radical change of attitudes, means, and people: for this reason, collaboration must be able to proceed well beyond the laboratory, and all stakeholders must be involved: public and private, industry, institutions, and operators from civil society.  

In the scientific field, we are experiencing a real cultural change that is destined to transform the way that different research projects are developed. At the center of this change, non-profit medical research institutes are increasingly asserting themselves. What trends have led to this position? 

 

Four trends for creating a unique and interdependent ecosystem  

The relationship between scientific research, territory, and community is mediated by national and international policies and is extremely articulated: it is based on scientific results (and on the publications that disseminate them), but to have concrete consequences, it needs to be implemented at different levels. To give rise to a unique ecosystem in which health and research are mutually dependent, it is necessary to implement a series of initiatives that serve to achieve:  

 

  1. A free exchange of data. The Sars-CoV-2 virus does not respect borders: the urgency and ubiquity of the crisis have imposed practices of wider and greater sharing on the global community of researchers, encouraging them to operate with a multidisciplinary approach that connects different domains and different sectors. In such a context, which has become more fluid and inclusive, non-profit medical research associations and institutes have been able to assert one of their important constitutive qualities: the ability to function as an interface and point of contact between all parties (patients, volunteers, local and national economic, and political entities, international bodies). The free exchange of data, sharing knowledge otherwise destined to be guarded, is now more than ever a compulsory choice. 
  2. New metrics that are more representative of a multi-stakeholder context. Conventional metrics that measure the impact of the research and innovation process on health and that traditionally express mainly scientific, economic, and financial dimensions are proving dramatically insufficient in representing the needs and requirements of the various actors involved. The development of a new theoretical and operational framework that can support integrated research must also take into account the value system, based on collective sustainability, of the Third Sector and, in particular, of the specificity of those organizations that have found themselves on the front lines of the crisis, namely the non-profit medical research institutes. Appropriate new metrics for assessing the impact of health research will therefore have to incorporate the interests of all stakeholders. 
  3. A more inclusive definition of scientific excellence. For many years, the concept of “Responsible Research and Innovation” (RRI) has been at the center of the international debate on science and technology. According to one of the most well-known definitions, that of the philosopher René von Schomberg, Responsible Research and Innovation refers to a transparent and interactive process through which various societal actors and innovators interact to ensure that scientific and technological design can result in processes and products that are safe for humans and the environment, ethically acceptable, and responsive to the needs and wants of individuals and society. (Source: unipi.it) Responsible research is research that produces a positive impact on individuals and society as a whole. A participatory multi-stakeholder approach is certainly better equipped to answer a complex question because it does not evaluate results solely in terms of scientific excellence, but includes economic and social considerations, patient and community expectations, and the responses of those key nonprofit actors operating in the biomedical and health fields. 
  4. More efficient ways of validating and communicating science. The common reflection of many editorials that have appeared in scientific journals in recent months is that the pandemic has contributed to a profound change in the way research is conducted and shared nationally and internationally (here we limit ourselves to pointing out articles that have appeared on paperback.it and the Scientific American blog) The way research is validated and shared has remained virtually the same over decades. However, the spread of the COVID-19 virus seems destined to profoundly change the two main systems of judging and communicating results, i.e., in-person conferences, which for security reasons have been replaced with remote online meetings, and the peer review system. In the latter case, the evaluation and recognition mechanisms, which tended to be very slow (it can take from six to nine months before a scientist’s manuscript is peer reviewed and appears in a journal) have been greatly speeded up and simplified, so much so that in the first 5 months of COVID-19 emergency, scientific journals have published about 9,500 peer reviewed articles, with Italy in third place for number of publications (906) (source: scienzainrete.it). 

New ways of relating and communicating between funders, researchers, institutions, and states are shaping a type of science that will have to develop the tools, including technological ones, to guide the development of smarter systems and more resilient societies.  

The future of science is therefore certainly international, interdisciplinary, and open. But such a future is only possible by continuing to involve all actors, among which there are certainly non-profit medical research institutions: 

 

Non-profit biennium 2018-2020: the growth of the Third Sector  

The nonprofit medical research associations we discuss in this post are part of the Third Sector, which we generically refer to when we talk about the “nonprofit” world. The entities that fall under the umbrella term “Third Sector” (different from the First and Second Sectors, i.e., the market and the State) are private organizations with a statute that act on a non-profit basis with the purpose of social utility and can take different legal forms: voluntary organizations, foundations, cooperatives, etc. They are all private legal entities and expressions of civil society, which are created to provide essential services, especially at the local level. Often, in meeting the needs of civil society, they constitute an alternative to public and private bodies. (Source: Il Terzo Settore in Italia, Silvano Venditti, degree thesis). 

 

Structure and profiles of the nonprofit sector 

According to the latest Istat report that surveys the number of nonprofit institutions active in Italy and their main structural characteristics, the nonprofit sector is confirmed to be growing: as of December 31, 2018, there were 359,574 active nonprofit institutions in Italy and they employed 853,476 people overall. The number of nonprofit institutions is increasing with average annual growth rates that are substantially constant over time (around 2%). 

In the March 2019 issue of the online magazine Vita Luca Carra and Sergio Cima, editors of scienceinrete.it, confirmed this trend, stating that, each year, about €300 million is invested in biomedical research by nonprofit entities. This is pure oxygen for the 35,000 researchers engaged in Italy to study and fight diseases. While this is not the most consistent contribution to medical research, the resources of nonprofits have two characteristics that are difficult to find in other types of funding: the rigorous and independent evaluation of projects and the competitive nature of calls for proposals, which reward the most deserving after an evaluation and selection conducted by groups of international experts, often foreign, so as to avoid academic groups and preferences that are independent of the quality of the research proposed.  

The world of non-profit medical research institutes, together with patients’ associations, is therefore a fast-growing world that often offers decisive support to scientific studies, thanks to fundraising, public awareness initiatives, and indications provided to researchers. 

 

2020: Italian nonprofits during the pandemic 

Italians have responded with generosity to the COVID-19 emergency, multiplying donations to non-profit organizations in the health and hospital sectors. However, the situation also presents some notable criticalities: for many third sector organizations, fundraising has increased, while for others, their very survival is at risk. While, on the one hand, there has been a historical peak in online donations and aid amounting to over €650 million has been mapped, on the other hand, 78% of the over 600 organizations interviewed by italianonprofit.it declare that they have more than halved their activities.  

The results of the monitoring #ILDONONSIFERMA presented by the Italian Institute of Donation (IID) on the trend of fundraising by nonprofit organizations in Italy confirm a generally mixed picture: in the first quarter of 2020, 24% of the population would have made a donation in the field of health and hospitals, equal to about 10-12 million Italians, with an increase of about 30% compared to donations for scientific research, health and equivalents of the previous year. The health sector and the theme of health therefore definitely catalyze the attention of donors.  

The data also shows a great ability of Italian nonprofits to adapt to a rapidly changing context: 24% of the entities contacted for the survey managed to avoid suspending services through the adoption of digital and remote channels and tools, transforming “action in the field into a remote relationship,” compared to 7% who had to suspend their activities completely (source: L’impatto dell’emergenza sulle donazioni).  

Finally, ilsole24ore.com reported evidence that emerged from a survey carried out between April and June 2020 by Italia Non Profit and Assifero, interviewing almost 1,400 subjects (Non Profit Philanthropy Social Good Covid-19 Report): in addition to 975 initiatives mapped by 722 donors, €785 million in funds were raised between April and July 2020. 

The article mentioned that lockdowns halted some fundraising activities and campaigns,  and that 41% of nonprofits expect revenue to be reduced by more than 50% by 2020 (and for another 38%t, it will be reduced significantly). By 2021, they believe that a real transformation will be needed, one that diversifies revenue funds and investment in capacity building.

 

Future perspectives of nonprofit medical research institutions during the COVID emergency 

In an article published in late June 2020, Paola Zaratin writes that Third Sector nonprofit organizations have demonstrated strategic competencies in addressing the COVID-19 pandemic, performing a subsidiary task to the state, and integrating these competencies not only into health and social care but also into research.” These competencies include:  

For this reason, Third Sector organizations, including non-profit medical research institutions, “that support responsible research and innovation and thus operate in the collective interest” have earned “a more relevant recognition and role” but will immediately begin to gear up to exceed to transform their fundraising strategies, embrace digital and diversify their approach so as to use a wider range of channels. The effort will need to be directed on multiple fronts.  

According to Il Sole24ore (source), the initiatives that nonprofit organizations plan to implement once the emergency is over will focus on:  

In light of the problems that will affect nonprofits in the immediate future, the challenge then is to strengthen the entire sector, in economic terms by raising sufficient funds, and in terms of awareness.

 

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