Medical Privacy
and Research
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@gem_hill
Medical Ethics
Subsequent Nuremburg Trials
- 10 points of Nuremburg code
Declaration of Helskini
“The Declaration upholds the right of patients to make informed decisions about participation in research, both initially and afterwards”
privacy matters
HHS estimated that privacy concerns led 586,000 Americans to delay seeking cancer treatment, and over 2 million to delay seeking mental health treatment.
The term “privacy” is used frequently, yet there is no universally accepted definition of the term, and confusion persists over the meaning, value, and scope of the concept of privacy.
Why share data?
Epidemiology and aetiology
Epidemiology is the science that studies the patterns, causes, and effects of health and disease conditions in defined populations. It is the cornerstone of public health, and informs policy decisions and evidence-based practice by identifying risk factors for disease and targets for preventive healthcare.
Anonymisation
Coded information
Linked Anonymised Data
Unlinked Anonymisation
Pseudonymisation
Public health is the arena in which clinical medicine, epidemiology, management, politics, and the law all meet—or perhaps more accurately, collide
solutions
care.data
Under the powers of the Health and Social Care Act 2012 (HSCA), the Health and Social Care Information Centre (HSCIC) can, under certain circumstances*, require Personal Confidential Data (PCD) from GP practices without seeking patient consent. One of the first initiatives using these new powers is the care.data service. This service has been commissioned by NHS England and will be delivered by the HSCIC. The HSCIC is England’s central authoritative source of health and social care information.
*When directed to do so by the
Secretary of State for Health, NHS England or when receiving a
mandatory request from CQC, NICE or Monitor.
solutions
HSCIC
National data sets define a standard set of information that is
generated from care records, from any organisation or system that
captures the base data.
research practices
what next?
Care.Data
The rollout of the £50 million scheme was due to start in March 2014, but has been postpon for six months because of concerns the public did not know enough about it
GPs vote for care.data to be opt in
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By gemhill
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