Below is a link to the latest published editorial in Family Practice, including parts of my work on primary care diversity data and its challenges. Many thanks to Carolyn Tarrant and Emma Angell.
During the CLAHRC event “Making it Real – Patients and public improving healthcare research”,Leicester, one of the sessions I attended was delivered by a patient who had extensive involvement within various clinical trials over the past few years. He was a great example of how health research, once recognised as an invaluable part of the improvement of treatment pathways for illnesses, can attract a greater number of patient participants. For him the trials were not separate from his current clinical treatment, but instead were directly related to revealing ways of making that treatment better. Barriers he observed to research participation included poor advertising and the scientific terminology used to describe the research aims, objectives and patient requirements . These were two of many observations flagged up as impeding access to trial information for patients. Present in the audience were health researchers and healthcare professionals involved in research and so one would hope that hearing the comments on potential improvements from a participant’s point of view may influence their methods of recruitment in future.
Patient involvement in research is ever-increasing, further embedding itself into standard research practice here in the UK which is great to see. The UK Clinical Trials Gateway and the national advisory group INVOLVE are among those that provide resources and information that help to keep patient & public involvement high on the health research agenda. By involving the patients and the public, clinical research will hopefully continue to democratise, increasing the amount of accountability of the researchers by allowing transparency throughout the research process. Overall this will pave the way to better research practice on the one hand, and increase public awareness and confidence in research on the other. I think that striving to do so may be a good way of increasing patient involvement within clinical trials.
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.
I have now visited two primary care organisations for interviews with health professionals and practice staff at each site. I would say that the interviewing experience and the data collected have both been interesting in their own way. The interviews have shed light on the practices’ procedures when it comes to recording non-clinical patient information on each patient record and I look forward to analysing the responses. One thing I have noticed is just how immensely busy some health professionals are! Although the meeting times had been scheduled in advance, it was common for the responses to be short and closed (with frequent clock-glancing by the interviewee!). Although I tried to prioritise the key question areas, I can see that some follow-up meetings with a couple of health professionals will be needed to fill in the gaps. Hopefully I can pick up where I left off.