Patients’ Support for Health Information Exchange: Summary

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

Perceived Benefits

Esmaeilzadeh and Sambasivan identified several perceived benefits of a Health Information Exchange in their paper. Perceived benefits may be different from actual benefits but are nevertheless valuable in the discussion of Health Information Exchanges. The identified perceived benefits from the literature review were

• Improved communication between health professionals
• Completeness of medical records
• Accuracy of medical records
• Improved safety of healthcare
• Improved quality of healthcare
• Tracking chronic diseases
• Early detection of infectious diseases
• Convenience for patients
• Expedited care
• Reduced healthcare bill
• Improved privacy of medical records
• Improved security

Perceived Concerns

Esmaeilzadeh and Sambasivan identified several perceived concerns for a Health Information Exchange in their paper.

• Inconvenient or delayed care secondary to system break down, security and privacy breaches
• Complexities of dealing with the system
• Security of sending personal health information over the internet
• A negative impact on privacy
• A negative impact on security
• Multiple parties and organisations viewing health information
• Limited control over who views files
• Sending incorrect information
• Incorrect recipients of information

These concerns in turn have further potential ramifications

• Incomplete or innaccurate information
• Reduced trust
• Increased concerns about privacy and security
• Reduced benefits from HIE’s

Addressing these concerns is important for developing sustainable HIE’s.

• Safeguarding against unauthorised viewing
• Auditing those who have viewed the records
• Identifying which parts of medical records can be shared
• Opt-outs

Patient Characteristics

Esmaeilzadeh and Sambasivan identified patient characteristics in relation to Health Information Exchanges.

• Gender: The authors find conflicting results for the effects of gender on either direct use of a Health Information Exchange (HIE) or accessing physicians who use HIE’s.
• Age: The authors cite research in which under 40’s saw Electronic Health Records (EHR) as improving privacy. Security was perceived as a more important factor for those between the ages of 40 and 64.
• Income: Higher income was associated with a more favourable attitude towards the use of HIE’s.
• Ethnicity: Ethnic minorities had greater concern about sharing information via HIE’s in two of the quoted studies
• Chronic disease: Patients with chronic diseases were more like to support the use of HIE’s. This was in part due to the perception that it would improve communication between healthcare providers.

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.

Types of Information Exchanged in a HIE

In their article, Esmaeilzadeh and Sambasivan discuss types of health information being exchanged in a Health Information Exchange. They identify five types of information that are considered sensitive by the National Committee on Vital and Health Statistics. The authors also note that patients are more willing to share deidentified information and less willing to share sensitive information. Patients are more willing to share sensitive information with mental health providers and less willing to share information with researchers. There were four types of information patients agreed could be shared:-

• Lab results
• Diagnostic imaging
• Main complaints
• Medication

The authors suggest that enabling patients’ control over information will improve confidence in HIE’s.

 

Types of Recipients in a HIE

Esmaeilzadeh and Sambasivan write about the types of recipients for information from a Health Information Exchange.

• Recipients who will be utilising information for clinical care. This is perceived as a more favoured option.
• Health Insurance – the authors cite research suggesting that recipients receiving information for health insurance purposes is perceived as a less popular option than for direct clinical care. These studies will also be country specific given international differences in funding of health care.
• Research – this is less popular than direct clinical care in the research cited by the authors. However they also cite research showing that patients are more willing to share information for this purpose after consultation.
• Marketing – this is less popular than direct clinical care in the research cited by the authors
• Health providers sharing information via HIE’s are perceived as more favourable than commercial enterprises offering Patient Health Records (PHR).
• Non-treating physicians – there is less willingness to share information with non-treating physicians than those involved in direct care
• Other uses – there is willingness to temporarily share limited information with government agencies and other physicians based on need

 

 

Patient Preferences

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

1. General consent
2. General consent with specific denial
3. General denial
4. General denial with specific consent

They also distinguish between

1. Opt-in: where patients opt-in to the HIE.
2. Opt-out: where patients opt-out to the HIE (i.e the default is an opt-in).
3. Opt-in with special circumstances in medical emergencies

The options for gaining consent include

1. Electronic consent
2. Paper consent forms

The general factors that are discussed in relation to opt-in and opt-out include

1. Stewardship of health information
2. Available resources

Appendix – Explanatory Notes

 

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

SNOMED CT® Posts

ICD 1-10 Posts

ICD-11 Posts

Citations

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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