Esmaeilzadeh and Sambasivan write about patient preferences for consent to sharing information in a Health Information Exchange (HIE) in their paper. From one paper they identify four types of consent
- General consent
- General consent with specific denial
- General denial
- General denial with specific consent
They also distinguish between
- Opt-in: where patients opt-in to the HIE.
- Opt-out: where patients opt-out to the HIE (i.e the default is an opt-in).
- Opt-in with special circumstances in medical emergencies
The options for gaining consent include
- Electronic consent
- Paper consent forms
The general factors that are discussed in relation to opt-in and opt-out include
- Stewardship of health information
- Available resources
What were the main findings in the Esmaeilzadeh and Sambasivan paper?
Esmaeilzadeh and Sambasivan have published a paper on Health Information Exchanges, ‘Patients’ support for health information exchange: a literature review and classification of key factors‘.
They identified seven key themes from the literature
- Perceived benefits
- Perceived concerns
- Patient characteristics
- Level of patient participation in HIE
- Types of health information to be exchanged
- Types of recipients
- Patient preferences regarding consent
Patient records are central to the delivery of healthcare and serve a number of functions including the recording of clinical assessments and interventions. Aggregated data is also utilised at a local and national level to inform commissioning.
Electronic Patient Records
The digitisation of patient records offers a number of advantages over paper based records. These advantages include automated backup of records, reduced use of physical storage space (since paper based notes are switched to servers), off-site access to records using mobile devices and the potential to develop analytical clinical support tools which use computers to process clinical data to help improve clinical decisions. Not all healthcare services have electronic patient records but most providers are moving in this direction.
Getting Electronic Patient Records to Talk to Each Other
When patients move between healthcare providers – for instance between primary care and the hospital – they may find that one provider does not have information that the other provider has. There are many providers and many electronic paper record systems. For two systems to talk to each other they have to solve a number of problems. When these problems are solved a patient can move between providers and healthcare information can be accessed by the different providers. A key solution to this problem of health information gaps is the Health Information Exchange (HIE).
The Health Information Exchange
There are many definitions of what a Health Information Exchange is. (Hersh et al, 2015) define a HIE as follows:
‘Health information exchange (HIE), the electronic sharing of clinical information across the boundaries of health care organizations’
Whilst this definition is simple, the process of sharing clinical information between healthcare organisations is technically complex and encompasses a range of software, hardware and governance issues. The process of helping systems to talk to each other is helped by the development of standards. A set of standards is outlined in the NHS interoperability framework.
Links to Other Posts in the Health Information Exchange Series
Esmaeilzadeh P, Sambasivan M.BMC Med Inform Decis Mak. 2017 Apr 4;17(1):33. doi: 10.1186/s12911-017-0436-2. Patients’ support for health information exchange: a literature review and classification of key factors.
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