The Institute for Scientific Freedom is an informal network of like-minded people. The Institute does not accept donations from the drug industry or similar sources with vested interests.
Democracy, scientific freedom and freedom of speech are constantly under attack because of financial, political, religious and other special interests. These essential values get eroded if we do not constantly work on preserving them.
Censorship of science is common. Unwelcome research results are often published with considerable delay, if at all, and often only after the researchers have modified their results or conclusions to accommodate the interests of sponsors or peers. Self-censorship is also common. Researchers may fear losing funding if they report honestly what they found, or they might never embark on science that is likely to lead to unwelcome results. It is far easier to get funding for main-stream projects that run no risk of changing the status quo than for innovative projects that might be of great public benefit.
In healthcare, these mechanisms are particularly strong and harmful. And the results are devastating. It has been documented in several independent studies that prescription drugs are the third leading cause of death, after heart disease and cancer, in the United States and Europe (1-10). As many of those who die did not need the drugs that killed them, this is a medical emergency, but so far, no substantial changes have been made to the way we research, regulate and use drugs. We wish to emphasize that:
- Science is facing a crisis of democracy, and public trust in medical science is low.
- The system for developing, researching, approving, controlling and using drugs and medical devices is broken (11).
- Our understanding of the harms and benefits of drugs and medical devices has been corrupted by a lack of transparency and inability to access the underlying data.
- The publishing industry is deeply conflicted and is an integral part of the broken system.
- Conflicts of interest and bias are jeopardising the moral fabric of scientific institutions.
- Medical guidelines and healthcare policy are influenced by commercial interests.
- Research that threatens industry’s profits is being shut down and censored.
- Research that is totally independent of financial and other interests is rare.
- Scientists are being persecuted and marginalised for exposing scientific corruption and proposing alternative narratives to the prevailing ones.
Overall goal and visions
The Institute’s primary area of work is healthcare, and we stand for pluralistic, open scientific debate and open access to data. The overall goal for the Institute is to preserve honesty and integrity in science and to help develop a better healthcare where more people will benefit; fewer will be harmed by the interventions they receive; and more will live longer in good health. The Institute has three visions:
1 All science should strive to be free from financial conflicts of interest.
2 All science should be published as soon as possible and made freely accessible.
3 All scientific data, including study protocols, should be freely accessible, allowing others to do their own analyses.
We will make a substantial contribution to credible and trustworthy medical evidence that our society values and needs. Our duty is not to commercial, political or guild interests, but to the people.
We need support, as the amount of work at the Institute will depend on the funding we can get. Currently, most of the work is carried out by volunteers, either for free or as part of the work they do under their employment elsewhere.
Lobbying
We will lobby for changes in laws, regulations, guidelines and approaches, e.g. in the European Union, the World Health Organization and the United Nations. It is particularly important to lobby to improve oversight of the relationship between the pharmaceutical industry, politicians, doctors and the regulatory agencies. The Parliamentary Assembly of the Council of Europe has acknowledged that the current system does not guarantee the primacy of public health interests and has suggested wide-ranging reforms, including alternatives to the current patent-based innovation model (12).
We will lobby funders of research and owners of trial registers and other registers with the aim of getting all data out in the open in useable formats that allow others to do their own analyses (13). Despite regulations requiring it, and researchers’ affirmations in published papers that they will respect it, much outcome data from clinical trials are never made available.
We will collaborate with other initiatives with similar principles and aims as ours (see Links).
Research and other information
We will prioritize research and publication of information to the public that further our visions. In particular, we will:
- Describe obstacles and suggest solutions for getting access to data and protocols.
- Perform systematic reviews based on clinical study reports obtained from drug regulators and drug companies.
- Restore invisible or abandoned trials (the RIAT initiative) (14).
- Promote and perform research on the misuse of medicines and its adverse public health impact.
- Identify and describe institutional corruption (15) in all its facets, and its drivers, and suggest ways to reduce it.
- Develop our website and present information that is important for supporting our mission in a format that is readily understandable, also for non-professionals.
- Work with the media to maximize the impact of our work and to bring about the necessary changes.
Finances
We will seek grants from foundations and elsewhere for core functions and for concrete projects. Industry funding will not be accepted. In case of sufficient financial support, we will consider the possibility of establishing a foundation or a charity.
References
1 Gøtzsche PC. Deadly medicines and organised crime: How big pharma has corrupted health care. London: Radcliffe Publishing; 2013, page 259.
2 Weingart SN, Wilson RM, Gibberd RW, et al. Epidemiology of medical error. BMJ 2000;320:774–7.
3 Starfield B. Is US health really the best in the world? JAMA 2000;284:483–5.
4 Lazarou J, Pomeranz BH, Corey PN. Incidence of adverse drug reactions in hospitalized patients:
a meta-analysis of prospective studies. JAMA 1998;279:1200–5.
5 Ebbesen J, Buajordet I, Erikssen J, et al. Drug-related deaths in a department of internal medicine. Arch Intern Med 2001;161:2317–23.
6 Pirmohamed M, James S, Meakin S, et al. Adverse drug reactions as cause of admission to hospital: prospective analysis of 18 820 patients. BMJ 2004;329:15-9.
7 van der Hooft CS, Sturkenboom MC, van Grootheest K, et al. Adverse drug reaction-related
hospitalisations: a nationwide study in The Netherlands. Drug Saf 2006;29:161-8.
8 Landrigan CP, Parry GJ, Bones CB, et al. Temporal trends in rates of patient harm resulting from medical care. N Engl J Med 2010;363:2124-34.
9 James JTA. A new, evidence-based estimate of patient harms associated with hospital care. J Patient Saf 2013;9:122-8.
10 Archibald K, Coleman R, Foster C. Open letter to UK Prime Minister David Cameron and Health Secretary Andrew Lansley on safety of medicines. Lancet 2011;377:1915.
11 Gøtzsche PC. Patients not patents: Drug research and development as a public enterprise. Eur J Clin Invest 2018;48(2).
12 Parliamentary Assembly of the Council of Europe. Public health and the interests of the pharmaceutical industry: how to guarantee the primacy of public health interests? Resolution 2071; 2015 Sept 29. http://assembly.coe.int/nw/xml/XRef/Xref-XML2HTML-en.asp?fileid=22154&lang=en.
13 Gøtzsche PC, Jørgensen AW. Opening up data at the European Medicines Agency. BMJ 2011;342:d2686.
14 Doshi P, Dickersin K, Healy D, Vedula SS, Jefferson T. Restoring invisible and abandoned trials: a call for people to publish the findings. BMJ 2013;346:f2865.
15 Whitaker R, Cosgrove L. Psychiatry under the influence: institutional corruption, social injury, and prescriptions for reform. New York: Palgrave Macmillan; 2015.
Last updated: 24 October 2019