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.
On the 5th March I attended the Society for Academics in Primary Care (SAPC) regional conference to present my work on “non-clinical patient needs: mapping diversity in primary care” a parallel session. Dr Alf Collins, Consultant in Pain Medicine at Taunton and Somerset NHS Foundation Trust, and Professor Nigel Mathers were the keynote speakers in attendance. Their talks focused on patient-centred care and, in particular, its influence in the management of long term clinical conditions. Dr Collins talked about the three principles deemed necessary for the personalisation of care: coordination of care, the engagement of patients in decision-making and thirdly, the supported self-management of care for individuals. He described how a fine balance of all three is something that the UK health system is already working towards but that it requires cultural changes within the system for it to work effectively. Following on from this, Prof. Mathers elaborated on the components needed for true patient ‘activation’; the combination of knowledge, skills and confidence which will allow patients to actively and safely manage their health.
Poster viewing sessions were scheduled throughout the day and I found one particular study’s poster quite relevant to the work that I have been doing over the past six months. It was on the feasibility and acceptability of Clinical Commissioning in general practice, drawing on evidence from interviews with GP’s, some of whom were saying that it was not their place to do so and that they had entered into the profession to help to care for people, not to ‘population-manage’ or budget for services. This was of particular interest to me as it provided a possible explanation as to why some of the practitioners I had interviewed responded apathetically to mapping out their population’s needs even though after recognising the benefits of such mapping for their patient population (i.e. informing commissioning decisions with cost implications)
Being the first presentation that I have delivered in front of an audience of health care professionals with academic interests, the planning was slightly more challenging than usual! But having the chance to run-through the presentation beforehand and to receive feedback from the SAPPHIRE group helped me to make the final adjustments. On the day it was well-received and I think it has given me the confidence to do something similar on an even bigger stage!
I presented on the topic of “non-clinical patient needs: mapping diversity in primary care”. Department of Health guidelines continue to emphasise the importance of seeing the patients as customers to a service, listening to them and catering to their requirements. For this to be done effectively within primary care organisations, they will need to have certain knowledge about their patients’ characteristics. There has been on-going interest to reduce health inequalities through using data intelligently, but less focus had been placed on non-clinical data (e.g. age, sex, spoken language, ethnicity, employment status, learning difficulties, visual impairments etc.) and the inequalities to health that arise through patient cohorts with these diversity characteristics. The annual GP surveys have reported a trend in certain patient cohorts who continually report back as being ‘underserved’. Therefore the idea of mapping out a practice’s population based on these needs may help a practice decide how best to allocate their resources (staff time and practice money) to reduce these inequalities. This could reduce inefficiencies in service provision by moving away from a ‘one size fits all’ even spread of services, or allocating services in an ad hoc fashion (as revealed through my interviews with practice staff), to making informed decisions based on real data. It is also key to think about these issues as we move to having Clinical Commissioning Groups or CCG’s nationally. Such data may lead to the smarter commissioning of services.
So, during the Departmental Conference, I particularly enjoyed the seminar by a representative of the James Lind Alliance, an organisation that I was previously unaware of. In a way they have been taking a niche approach and have turned the tables around when considering the formulation of research areas and topics. Continue reading
The Annual Health Sciences Departmental Conference took place on 11th December. It was a chance to celebrate the successes of various research projects this year and to hear about the progress made by PhD students in their studies. I thought the conference was a unique opportunity to meet others within the department, especially as many researchers are either scattered across numerous sites within Leicester or have work patterns where regularly working away from the office is an option. The first thing I noticed was the sheer number of attendees, easily surpassing the 100 mark, all under the same health research umbrella. The icebreaker gave me a chance to find out more about the research teams from The Infant Mortality and Morbidity Studies (TIMMS) Group to the Biostatistics team. After the ice breaker and team working activity, presentations were given.
More to follow shortly.
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.
This week, I attended a seminar presented by Helen Webb on perceptions of obesity and the importance of analysing patient-health professional perception of the condition. Helena described the importance of looking at obesity less from the angle directed by the word’s medical definition, and more towards sociological undertones. I particularly enjoyed the parts of the presentation that discussed the moral and political models of obesity, often fed to us by media and popular culture. These have contributed to the ways we shape success, achievement and creditworthy behaviour in relation the obesity and weight loss.