Summary Young TI event - Transparency in Healthcare
Date : 20/12/2016
Summary of “The role of the media as watchdog for transparency in healthcare”, Young TI event of 25 October 2016
The well attended evening started with a welcome and short introduction by moderator Francesco Vinci, member of Young TI and Policy Advisor at News Media Europe.
Francesco welcomed the attendees and highlighted the crucial importance of this topic for Transparency International. The media plays a crucial role in exposing and holding those accountable who abuse their power for personal gain. Often, taking up this role is much easier said than done. Various stakeholders might exercise pressure on agents, such as journalists, impeding on their independence and subsequently, harming the quality of journalism.
Young TI invited three experts with backgrounds related to media and communications in the field of healthcare to share their views.
Our first speaker was Director of Communications at EFPIA (European Federation of Pharmaceutical Industries and Associations), Andy Powrie-Smith. Andy stressed that societal expectations on transparency are increasing. Managing profit making in healthcare is a complex issue, leading to a significant tension between transparency and privacy. Therefore, how to share and control data in this research based industry? How to guarantee patient confidentiality? The legislation in Europe varies, in Spain for instance the public interest is considered more important than privacy, in other European countries it is based on the consent of the health professional to share data. In some cases, regulations go beyond legislation. Members of EMA (the European Medical Association) must, for instance, submit data about local trials and this is shared in the public domain.
From a commercial perspective, situations are sometimes hard to tackle. In a country heavily affected by the financial crisis, customers might no longer be able to afford medicine or vaccination schemes. How should the sector respond? Differentiating pricing is important, but it is more difficult to value the cost of health than the cost of commodity goods. The public will have an opinion, to a large extent, based upon information spread by the media.
How should the sector interact with the media? Several elements need to be considered:
1. Patient safety: in case of a few bad reactions to medicine, sometimes it causes a lot of people to no longer take certain drugs, which can be disastrous for public health (e.g. MMR vaccination).
2. Privacy protection: consent to disclose can put others off, especially if being transparent has a consequence for individuals. The sector does not trust the media to handle sensitive data with the right level of integrity.
Reporting mainly on Health & Consumers, Sarantis Michalopoulos, told us more about his work as a journalist for Euractiv. What are the temptations journalists need to resist to not betray their ethical principles?
Promoting transparency and public awareness is crucial for journalists. This is not an easy task in the healthcare sector, which is heavily regulated and the morality debate is always near the surface. The assumption that the industry wants one-sided stories is wrong, stressed Sarantis. It is in the interest of all stakeholders to read inclusive articles, reflecting diverse opinions. He adds that NGOs are often good at ‘making noise’, it sometimes takes just one tweet for a story to go viral on social media.
Journalists are in the middle of this huge clash of interests and behind that can be a market of millions of euros. In fact, not satisfying anyone, is a sign we have done a good job, Sarantis stated.
The European Commission and the European Parliament recently have more attention for the concept of affordable medicine for instance. A first requirement is transparency about price setting, but what is the border between confidentiality and transparency? We should learn from how we fail to take a position for the tobacco and alcohol industries. Sectors that sometimes fund terrorists and affect public health and yet, NGOs remain very silent.
Jean-Paul Marthoz, with his unrivalled track record in defending media freedom and pluralism, shared his views on this important topic as advisor to the Ethical Journalism Network (EJN) - the international network of media professionals whose aim is to advance education in and around the principles of ethical journalism.
Jean-Paul Marthoz started by mentioning that, in his view, finding a balance is not the objective of journalism. In ethical journalism, an important principle is to provide reliable knowledge for citizens. Journalists must act as a watchdog, taking responsibility for checks and balances. Ethics in healthcare is not studied by his organisation so far, but, for instance, the Edinburgh University has studied this topic.
What are the challenges? Journalists must investigate, which involves time, budget and risk. Healthcare as a sector is a major challenge. Jean-Paul illustrates with 5 pillars applicable for journalists:
1. Truth seeking
3. Humanity (minimizing harm, being fully aware of the consequences)
5. Accountability (if we are wrong, we must admit and openly correct)
Healthcare is complex for practically all those pillars. It can enter into politics, the international environment dealing with different legislations and cultures, working with the society pages, economic interests and the healthcare industry itself obviously.
In journalism, ethics is as important as knowledge. Relations of power are decisive, and knowledge is power. If a journalist has an inferior position in that respect, it is difficult to validate facts. How can we train people with a journalistic background to become expert in the domain of healthcare? This is a sector that has many actors, like trade unions, politicians, managers of healthcare institutions, doctors, lobbyists, etc. To understand the landscape, it requires investment to train people. Power is also about economics. Actions from journalists can have huge consequences on companies’ shares and on jobs in those organisations. This puts a lot of pressure on the sector. A third element is the human aspect, it is a domain that involves people, individuals. Privacy is a big issue, which was recently illustrated when medical records from Olympic athletes were made public. How ethical is that? The decision-making processes in the systems we built in our societies for healthcare is so complex and opaque, it is often not corruption in an illegal way, but has the same effect.
During the Q&A session, several interesting issues were raised. One of them touched the relationship as a source for a journalist. Making critical statements, sometimes implies to never to be invited again by a broadcaster or having to alienate an individual who provides inside information. Stakeholders often try to control journalists in that way.
The cost of medicine is also very difficult to assess. How can a journalist engage in such a discussion? Regulators do not require transparency, the responsibility for this is put on the industry as a whole. It means that it is virtually impossible to assess the cost effectiveness of the sector for instance.
As a final remark, it was mentioned that the trust in the media is decreasing and mainstream media is not able to cover healthcare issues that take place in the European landscape. They are often aware of the national discussions, but have no clue what happens at the wider European level.
The audience this evening illustrated the pressing interest for the topic by all stakeholders and created valuable insights in the complexity and risks involved for journalists when acting as watchdogs for transparency in healthcare. Participants represented several associations, the federal police, public affairs, a number of pharma corporations, academics and the public sector. Young TI will continue to work on this domain, their next activities will be published on our website and social media.
December 2016, Hanneke de Visser, Operations Manager TI Belgium