Yesterday Adam Tansey, co-founder of the children’s charity ‘KEEP THE BEAT’, described his emotional journey with his youngest son, 4-year-old Albert, who was born with half a heart. From day one Tansey’s family have relied on the expertise and the Intensive Care Unit in Glenfield Hospital which have been key to keeping Albert alive especially for his unexpected turns for the very worst . Therefore Adam’s passion to do all that he can to save Glenfield Hospital is understandable especially seen as there has been debate over the validity of the data and techniques used to come to the decision to close the four childrens’ heart surgery units, Glenfield being one of them (more details about the Safe and Sustainable Review can be found on the NHS specialist services website, including the report of the public consultation). It showed me that, through all the political wrangling and to-ing and fro-ing within the judical process, it is ultimately the lives of Albert, Adam and his family that will be affected. For them, losing this hospital will be devestating, a feeling many in boardrooms may have failed to realise.
To support Keep the Beat, supporting families affected by congenital heart defects, visit http://www.keepthebeat.co.uk/site/index.php
A huge thanks to Adam for a very poignant talk.
Today I attended a talk by Dr Piotr Ozieranski on the concept of deniability in drug reimbursement policy in Poland, and I really did find the discussions very insightful.
Piotr described various networks and structures in place that have established levels and degrees of power within the drug reimbursement processes in Polish public healthcare. The discussions began to focus on the presence of shadow elites (a concept discussed in a book of the same title by Janine.R.Wedel) who, through the ambiguious nature of their multiple roles in public and private sectors, are able to maximise their influence within drug reimbursement decision-making while minimising their accountability of making such decisions. These shadow elites, or ‘flexiants’ as they were coined, use their roles within private sector, public sector, media, legislation and non-profit organisations to influence decision making. By not having clearly defined job roles the boundaries for what is and is not acceptable , the blur at the borders between the difference sectors causes questionable informalities of negotiation and drug price setting to be standardised within the system. It was not uncommon to see one individual chairing a health NGO and at the same time working in a related position within the public sector. The two organisations would be working closely together and it would not be surprising if certain decisions were continually made to benefit the NGO, for example. Where their roles intersect across the different sectors, flexiants are able to affect many different stages of the drug reimbursement decision process depending on their desired outcome. This is all done without being held accountable for ‘one big decision’.
The failure to be held accountable despite having great influence represents the deniability aspect to Piotr’s current work. So far from Piotr’s findings, it seems like transparency is one of the key elements missing in the case of the drug reimbursement policy affairs. I was particularly intrigued that these individuals, through exerting their influence, could potentially be more powerful than the more apparent elite of those in political leadership or government (the imbalance of this power is felt more so in newer democracies across Eastern Europe and other parts of the world).
Flexiants, in many respects, can infiltrate traditional power hierarchies and this got me thinking about who the real actors were when considering public health policy implementation in the UK but more so in lower-income countries. So much time can be spent lobbying those in more apparent government positions to endorse or at least approve of a health initiative, but is enough attention paid to the less apparent influences? Is their present even recognised or acknowledged? And just how ethical is it to consider engaging in these substructures, even in the slightest, when pushing for change that can benefit the health of a local population?
The ability to implement successful public health schemes may, in some circumstances, depend more so on the hidden structures of flexiants than I had previously imagined. Unsurprisingly, such forms of decision-making are often deeply entrenched in practice and it becomes very difficult to first, accurately map the prevalence of shadow elite decision-making and secondly, to tackle the problem of such networks by possibly closing up loopholes in governance that have been allowing this to take place.
Today I attended a seminar delivered as part of the MRes in Applied Health Research course at the University of Leicester. Dr Susan Wallace delivered the session, giving an overview of the key ethical issues pertaining to research study design. A discussion followed with interesting opinions voiced concerning data confidentiality and privacy, problems surrounding informed consent with vulnerable persons, and the balance between the risk to patients and the potential benefits to science (medical or social) when deciding to proceed with a project. In my opinion, the over-riding principle that health researchers should have in the back of their mind is “do no harm”. A good research design that demonstrates an awareness of this principle will be more likely to stick to rules (changing bad rules instead of breaking them, as Susan mentioned) and encourage a more ethical research approach .