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This response specifies problems in the NHS draft-mandate on care-objectives. Though the draft-mandate is a positive first step towards a more patient-centred approach to healthcare, there are significant conceptual, strategical and technical problems in the document. Methods to ensure transparency and accountability are necessary, along with establishing more concrete definitions of concepts such as patient-centredness, normative strategies for implementation and relevant methods of assessing progress are necessary to ensure that an integrated patient-centred service is implemented that focuses on specific comprehensive and personal health outcomes.
The Tuke Institute is an organisation of scientists, service-providers, and organisational-development professionals pursuing scientific research, policy, and civil capacity-development to create truly patient-centred medical services with the focus on health-effectiveness. It uses these methods to promote solutions to problems in the delivery of services in medicine and medical science and focuses on new methods of promoting and enabling civil participation in the design, delivery, and governance of such services. The fundamental goal is to make medicine about what ill people need to get well and to stay well.
HIV-related illness in the UK continues to be a significant burden to the public in terms of its financial, social, and personal costs. Despite the obvious fact that the HIV pandemic is driven by behaviour, expertise in behavioural science and behavioural medicine is inadequate or even absent in all areas of policy and service-delivery, and policy-setting is often a function primarily of political considerations within professions or provider-organisations, with the evidence- base informing these as a secondary concern.
There is also a primary problem in the lack of public participation in policy-setting, service-delivery, and governance, which relates to the themes common across all problem-areas: of complacency, a loss of vision, and a lack of leadership, particularly fresh leadership.
This submission consists of an expert opinion that identifies a number of problems and both individual and systemic solutions thereto. These include the development of:
1. an organisation that can represent the interests of people with HIV in terms of medical (including social) and scientific services delivered on behalf of people with HIV to people with HIV
2. Health-Outcome Delivery Standards for medical services, so that the health-effectiveness of medical services can be measured in reference to how they help people with HIV live healthy and productive lives
3. integrated medical services in reference to Health-Outcome Delivery-Standards that address the comprehensive physical, mental, and social health-needs of people with HIV, facilitated by case-management, to which behavioural medicine is key and which have been shown to be cheaper than the current physician-centred model
4. a new framework for HIV prevention, focusing on health-effectiveness and the measurement of health-outcomes in both those with HIV and those at risk for infection
5. a common and consistent message and approach for public education about HIV, to avoid the systemic problems inconsistent messages have caused to date
6. new means of public participation so as to ensure representativeness of solutions
7. a review of the representativeness of civil and provider-organisations in service-delivery generally and in medical practice and in scientific research in particular.
8. a blue-print for translational science in HIV research so as to ensure the validity and value of funded research done for the public benefit, including a system for surveillance of illness-burden and health-outcomes in HIV treatment
9. a coherent policy on criminalisation that might shift it from criminalising HIV-transmission to criminalising disability-discrimination
10. a strategic 10-year plan for a coherent, national response to HIV in the UK.
These solutions would facilitate great progress towards a modern and cost-effective national response to HIV in the 21st century and refresh the vision and model that HIV provided historically for the response to other costly chronic illnesses that burden society today, including breast cancer and neurological disorders.
This response specifies problems in the White Paper around measuring the quality of services, the need for NICE standards about the design of medical services, the nature and efficacy of feedback, the need for common coding of data measuring health-outcomes (using the WHO’s International Classification of Functioning, Disability, and Health, not just the ICD-10), ways in which continuity of care can be improved and audited, the essential nature and limits to public participation in medical services, problems with the idea of GP consortia-based commissioning, and fundamental flaws in a pro-market approach to a pro-social system in terms of regulation.
This paper puts forward a model of participative medical governance. It builds upon two other models being developed by the Tuke Institute: i) a model of biopsychosocial medical services framed by a personalised assessment of illness, which is used to bench-mark individual medical outcomes that focus above all on health-effectiveness—i.e., helping the ill to get well and stay well long-term; and (ii) a model of measurement that relies on scientifically validated methods to determine if and how a medical service is being health-effective, thereby ensuring a valid evidence-base for medical governance.
Medical governance is required to ensure that a medical service remains health-effective and delivers services first and foremost to the public rather than to its providers. This model of participative medical governance specifies a robust system by which the public can ensure that information on health-effectiveness is used to ensure quality of service and it relies on the public’s participation at all gradations of service, from the patient and the family caring for the patient all the way out to national policy, in a horizontal framework. Importantly, this model provides the means by which to identify at an early stage the points where intervention is necessary with poorly performing clinicians and administrators, so as to protect the public’s health and prevent malpractice.
The model provides tight feedback on the quality of service, which is likely to increase clinicians’ morale when their performance is assessed as good and provide early motivation for all clinicians and administrators to address anything less. It promotes mutual knowledge-transfer between service-providers and service-users and ensures high transparency and accountability, preventing scapegoating while engendering a culture of professionalism and personal responsibility. Together, these aspects promote the repair of trust in and goodwill towards medical service-providers, which have been so badly damaged through the present medical culture that has lead to excessive litigation and the need, in Britain, for government Inquiries over the recent years.
Many solutions to the problems of medical effectiveness fail to demonstrate that they—or the model they support—are fit for their intended purpose. For example, while such initiatives as the multi-billion-pound “Connecting for Health” programme are essential, they can not be health-effective (and therefore cost-effective) without building in a framework of health-effectiveness-measurement and of participative medical governance. This paper shows why. Many of the problems analysed here are typical of nationalised medical service-systems and the British National Health Service (NHS) is used as an exemplary problem to solve. The analysis is framed specifically in relation to the findings of the British Government’s Bristol Inquiry, a high-water mark of problems in the NHS, the final report of which made a series of recommendations intended to be solutions to those problems. However, the report did not specify how its proposals would deliver solutions to long-standing organisational and cultural obstacles; this paper fills that gap and proposes a system that has the scientific benefits of being evidentiary, coherent, practicable, and testable.
While the model provides a solution to the problem of medically and financially ineffective nationalised medical services, it is not aimed at solving the problems of the British National Health Service (NHS) per se: it is equally a model for American systems, for example, where there has been inadequate emphasis on medicine as a pro-social service rather than a pro-market opportunity. While elements of the model can be applied in commercial medicine, a partial implementation severely constrains the model’s health-effectiveness: only a nationalised system is able to address comprehensively the illness-related needs of a given individual in the interests of that individual and the public as a whole. Additionally, the model discussed is equally and directly applicable to social medicine—that is, not just to ‘health-care’ but to ‘social care’ as well—and provides a common framework for solving common problems.