1102-CR1.1: Evidence Submitted to the House of Lords’ Select Committee on HIV and AIDS in the UK
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.
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