Patients’ Support For Health Information Exchange – Level of Patient Participation in HIE


Esmaeilzadeh and Sambasivan identify the level of patient participation as an important factor in the success of a Health Information Exchange. They reference research which finds that patients are willing to allow physicians and family to view their records but not friends, employers and physicians not involved in their care. The authors note that not all information is suited for patient viewing (in terms of technical details and also in preparation of disclosure) and other information cannot be communicated electronically (based on US laws). Patients also want to know about the data that is being disclosed, who is sending and receiving the data and the function of the HIE. The authors cite research highlighting the importance of patient involvement in HIE’s.

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

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

General Posts to Date on Health Information Exchanges

Posts on Examples of Health Information Exchanges

SNOMED CT®/ICD Mapping and Harmonisation Posts


ICD 1-10 Posts

ICD-11 Posts


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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Disclaimer: The comments made here represent the opinions of the author and do not represent the profession or any body/organisation. The comments made here are not meant as a source of medical advice and those seeking medical advice are advised to consult with their own doctor. The author is not responsible for the contents of any external sites that are linked to in this blog.

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