Impact of electronic health record information exchange between primary and specialty care on doctors providing caring for patients with diabetes mellitus.
Patients with chronic diseases such as diabetes mellitus (DM) have complex care needs which are met by healthcare providers in different clinical locations working as a multidisciplinary team. Coordination of care across organisations can pose a challenge as a result, particularly during transitions of care between primary and hospital care settings.  Health information exchange (HIE) between integrated electronic health records (EHR) is suggested by Rinner et Al as a means of clinical data sharing to facilitate their concept of “informational continuity of care” which can improve outcomes in patients with chronic illnesses such as DM. 
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In this report, we use Shade et Al’s definition of HIE – “the process of electronic multi-directional transfer of identifiable, patient-level information between different organizations” – to describe data sharing.  Based on this definition, we set out to determine the role of HIE between EHRs in hospital and primary care settings when coordinating care for patients with diabetes mellitus by examining the facilitators and barriers to data sharing through a literature review. We will approach this primarily from the perspective of general practitioners (GPs) who typically act as overall coordinators of an individual patient’s care. We will use these findings to propose a methodology to confirm our findings in a clinical setting and provide best practice recommendations for GPs or hospital doctors interested in improving continuity of care for patients with DM with an integrated electronic health record.
To identify papers for our literature review, we searched PubMed, EBSCO, ScienceDirect …. databases using the search terms “healthcare information exchange” OR “ inter-organisational data sharing” AND “electronic health record”. We then selected the papers that were most relevant to our research question and identified the facilitators and barriers to data sharing outlined in these works.
Patient EHR exchange between primary care and hospital specialist has the potential to provide an effective care coordination in the continuous treatment of patients with chronic conditions such as DM. According to C. Rinner et al. in a recent study for DM patients in Austria More than 90% of Austrian DM patients visited two or more different healthcare providers in one year, i.e. there was a need for HIE between these healthcare providers. Having access to complete patient information at the right time has the potential to increase the quality of care on these patients.
HIE goals include improving patient care through more complete data availability, increasing work efficiency by providing baseline patient information, reducing cost by decreasing duplication of procedures and services, and benefiting public health efforts.
However, according to Schmit et all, despite the potential benefits, HIEs are underutilized, full integration remains elusive, and several barriers prevent their implementation and operation, including issues relating to governance, resource deficiencies, stakeholder involvement, patient privacy and consent, and data protection. From our literature research we have selected the most relevant barriers as well as facilitators that we need to look at in the context of HIE for continuous care of Diabetes Mellitus between GPs and hospital specialists.
When it comes to Health Information Exchange (HIE) across different healthcare providers, one of the most important and common barriers we have found across different reports during our literature review, are around lack of interoperability in EHR systems.
Health Level 7 International defines interoperability as: “the ability of two or more systems or components to exchange information and to use the information that has been exchanged”. , and also it breaks it down in two different categories:
● “’Functional’ interoperability is the capability to reliably exchange information without error”.
● “’Semantic’ interoperability is the ability to interpret, and, therefore, to make effective use of the information so exchanged.”
On initial EHR implementations there was no long term strategy around interoperable solutions, for example in US initial EHR implementations, according to Reisman, incentives primarily provided on EHR adoption and not in HIE. This lack of long term solution strategy, together with fragmented ecosystem composed of different HCPs, such us hospitals (public and private), primary care, ambulatory care, has been highlighted as per the literature review as one of the main Barriers for HIE.
HCPs have reported dissatisfaction with disintegrated EHR systems and difficulties with data incompatibility across different sites.  We can find different examples at the literature that highlight these interoperability challenges. For example, according to Torre-Diez et all (2013), in Spanish public health system, the two main healthcare levels organizations, primary care and specialty care, developed their their own EHRs systems in isolation, with no connectivity between them. Another example can be found in US, where, according to Reisman, in terms of government-certified EHR, there are hundreds of different EHR systems in place, what makes interoperability not an easy task, as each system use its own clinical terminologies and has its own specifications and capabilities.
From an integration technology point of view one of the main causes of this barrier has been the lack of existing mature open integration standards on initial EHRs implementations. We’ve seen in the literature many scenarios where different HCPs adopted EHRs from different vendors, EHR solutions provided by these vendors are released with limited interoperability and in many cases they charge a premium for providing additional HIE capabilities. On a positive note, we have observed this trend is changing, in 2014, Health Level Seven (HL7)  published the first release of Fast Healthcare Interoperability Resources (FHIR)  , this is an open framework that defines message standards by describing their structure and elements, also known as resources, and provides an API for EHR exchange using these predefined message structures.In the past recent years,these open standards are facilitating interoperability among differents HCPs and they are presenting a wide adoption among providers and IT vendors.
General practitioners are recognised as one of the most economical and cost efficient places to treat patients with complex medical conditions such as diabetes. The quality and intensity of care provided by GP’s, requires current, comprehensive patient information from multiple care centres. This health service relies on the availability and interoperability of Health Information Exchanges between GP’s and clinical specialists.
The literature highlighted that financial costs impact on the effective implementation of EHR’s. Costs associated with acquiring the needed infrastructure and skills as well as concern on the return on investment have been highlighted in the reviewed papers.
Cost barriers, including purchasing, annual maintenance and cost of adoption are all valid barriers for primary care facilities not to adopt EHR. Although these are influential barriers they only contribute to the reasons of poor EHR adoption.
Government financial incentive program HITECH in the US found that it “accelerated the implementation of EHR uptake, but the lack of standards and failure to converge on a dominant design” have led to system interoperability challenges between health care centers.
In the UK the National Program for Information Technology NPfIT was initiated in 2002. This was a top down approach to introducing EHR across healthcare providers. Both the US and UK failed in successfully implementing nationwide EHR systems mainly due to the “inability to meet with stakeholders expectations”. These failures are estimated to have cost around $35 billion for the US and 14.1 billion for the UK.
Both solutions face interoperability issues, and with technology and systems changing rapidly it is difficult to agree on a solution that doesn’t have spiraling costs associated with it.
For GPs, adoption of EHR’s is difficult, mostly it has been found that lack of readiness results in the lack EHR’s implementation. Organisational readiness significantly influence the adoption of eHealth, which is consistent with literature suggesting that organisations that are more ready in terms of available resources, are more likely to successfully adopt innovation. GP practises have limited skills and resources to become technologically, financially and organisationally ready. Therefore find it difficult to implement and utilise EHR to their full potential and capacity.
Using EHRs to coordinate care paths for patients with chronic diseases such as diabetes requires the ability to incorporate data from many care providers and associated systems. These exchange paths are not governed by a defined set of standards and protocols therefore executing a complete electronic patient record from all care providers are difficult. Regulatory guidance should be provided to local carriers, so that vendors and providers can work together to streamline workflows, relieve data entry burdens, promote innovations, and, thereby, enhance the usability of EHR’s.
The Swiss Federal Parliament passed a law that requires hospitals and nursing homes to adopt interoperable patients’ electronic health records (EHRs) compatible with national standards, i.e. with technical rules that facilitate sharing of standardised data and the development of health information exchange (HIE) networks.Standards such as these will help integrate primary care EHR’s and hospital HIS creating an interoperable healthcare system, yielding benefits such as efficiency, quality and safety. More streamline workflows will encourage EHR adoption by general practitioner thus allowing more integrated comprehensive patient care records.
When considering user commitment to data sharing, the method of HIE and usability is an important consideration. A 2014 Finnish study examined the experience of physicians when using different types of HIE including a web based EHR and a regional virtual EHR.  This study highlighted many of the limitations of data sharing between EHRs, particularly with regards to accessing information and the time-consuming nature of using these systems. For example, users of the web-based EHR could only see information pertaining to hospital attendances if they had personally referred the patient for specialist opinion. On the other hand, regional virtual HER users can access all of a patient’s information provided consent has been given by the patient. Of note, users of the regional virtual EHR were significantly more likely to be satisfied with the quality of data, the efficiency in retrieving patient information and reported fewer issues with usability.
Data Privacy/Security – GDPR Legislation
Data privacy, data consent and data security is one of the main challenges for EHRs and HIEs implementations. Health data is considered sensitive data and it might be subject to strict policies. These policies varies from country to country, and even you can find examples for some countries where different regions apply different policies.
In Europe part of these challenges are now regulated under General Data Protection Regulation (EU) 2016/679. GDPR came into force on May 2018 and its main goal is to standardize data protection laws across EU countries by setting strict rules when accessing, processing and controlling personally identifiable information (PII)with the intention to make it easier for individuals to understand how their data is being used. EHR and HIEs solutions must be GDPR Compliance and to do so they need to build, implement and be able to demonstrate comprehensive data privacy compliance to differentiate between personal data and personal sensitive data to effectively assess the risk where personal processing data could lead to physical, material and non-material damage. This can be seen as an additional barrier due to different reasons:
● Additional complexities and cost to develop the solution to ensure GDPR compliance
○ Implementation of security controls by design such us
■ Personal data encryption at rest
■ Personal data encryption at transit.
■ Develop a solution that support secure interoperability protocols
■ Data access & data control policies and data traceability.
● Additional cost to make existing EHRs / HIE solutions, already in place before GDPR came into force, compliance.
● Additional interoperability challenges, secure protocols must be agreed between the different HCPs involved in HIE.
According to Schmit et all, “Law is a barrier to and enabler of HIEs”. In this section we are looking at legislation from the facilitator angle.
While regulations and legislation are often seen as barriers to data sharing, this may be attributed to poor understanding of the laws and regulations in place. For example, in Canada, the Personal Health Information Protection Act allows healthcare providers to share and access health information for the provision of continuity of care without needing explicit consent from patients.  However, in practice, healthcare providers are sharing not sharing data due to concerns regarding privacy and security.
Legislation may also mandate the sharing of data between organisations. For example, in 2009, the Health Information Technology for Economic and Clinical Health (HITECH) Act was passed in the US to promote health information technology including the electronic exchange of health data between care sites.  In 2011, legislation was introduced in Finland which means that all patient data captured in the public health system, whether in a primary or specialised care setting, is available to all healthcare professionals working in the public sector provided the patient is aware of the sharing of data and has consented to some or all of their data being shared.  In 2015, Switzerland passed a law which requires all hospitals and nursing homes to adopt interoperable EHRs. 
HITECH accelerated the adoption of EHR’s in the US for primary care practices, but for continuing system utilisation GP’s need ongoing supports. Large financial incentives are being provided to eligible practitioners for adopting and using a certified electronic health record to: 1) capture health information in a coded format, 2) track clinical conditions and quality reporting, 3) support clinical decisions-making and care coordination, and 4) eventually improving performance. Thus allowing GP’s to provide a more comprehensive coordination of care to patients while improving quality and reducing costs. Access to HIE gives GP’s the opportunity to compare a complete set of patient data results thus avoiding exam duplication and possibly more hospitalisations.
Giving patients access to their electronic records, allowing patients to schedule appointments online, and become more involved with managing their health influences general practitioners to adopt EHR’s and utilise advanced system functionalities.
When EHR’s are interoperable to HIS patient care for chronic conditions such as diabetes their specialist care requirements can be tracked and coordinated through the different treatment centres involved.
As we move towards a patient-centred approach to healthcare provision, it is important to consider the views of patients when sharing their health information. Patient support for HIE has been identified as an important facilitator for data sharing.  Studies have shown public support for HIE in the context of a national EHR to facilitate continuity of care.  Patients are becoming more aware of their right to consent to data sharing between healthcare providers.  They are more likely to consent to data being shared if they believe this will improve communication between their HCPs, allow them quicker access to care, increase the accuracy of their medical records and decrease the cost of care.  Interestingly, patients with chronic illnesses such as DM or other regular users of health services are more likely to consent to sharing of their data. 
Transparency of data sharing and access to data was important to patients who were more likely to support HIE if they knew what data was shared and why.  Other factors increasing the likelihood of patient support for HIE included robust data security and privacy, trust in HCPs, patient access to data and having control over which data is shared, particularly data of a sensitive nature such as data pertaining to psychiatric illness and sexually transmitted infections. 
Like legislation, technology can act as both as a facilitator of and barrier to HIE.
When used properly, technology plays a central role as facilitator for HIE, technological facilitators in HIE have been identified and highlighted at different researches, we want to walkthrough the ones that may have a greater impact:
● Use of interoperability open standards to facilitate seamless exchange of information between GPs and Hospitals. As per literature review more than often different HCPs within a country, region or district, use different EHR solutions. Interoperability standards are meant to abstract the backend EHRs system complexities at the different HCPs, by creating a layer where exchange of information is made using common messaging standards and protocols and making EHR vendor irrelevant when it comes to HIE, however this is important for HCPs, before adopt and EHR system, this is compatible with open interoperability standards. In Ireland there is an organization, HIQA, working on the development of eHealth Interoperability Standards for Ireland. 
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● Use of publish/subscribe services. These services used a push approach. According to C. Esposito et al. publish/subscribe services for sharing medical data address the communication issues between general practitioners and secondary care physicians. . This paradigm uses event based notification, to notify destination (subscriber) the availability of new information. In 2012 Campion et al. published a study about physician usage of and satisfaction with HIE.  One of the areas they covered on the study was about usage push and pull approaches, 80% used push HIE and 53% pull HIE.  They also looked as satisfaction with push and pull HIE, in this case, according to the study, greater proportions of physicians were very satisfied with specific aspects of push HIE than pull HIE. FHIR defines pull and push approaches: 
○ “Push: As new information becomes available, or whenever it deems appropriate, the source system sends the information to the destination. It expects the destination system to maintain and index the information on receipt. The source system must trust the destination system to manage access/security appropriately.”
○ “Pull: The source system maintains and indexes data. When the destination system wants or needs the information, it must retrieve it from the source system. Either the source or the destination (or both) manages access/security.”
When it comes to continuous care of patients with Diabetes Mellitus, and in general for continuous care patients, a push approach is more effective (Ciara you might be able to develop it further)
The sharing of clinical data between EHRs can be done using direct exchange or query-based exchange. (27) With direct exchange, health information is pushed from one HCP to another with a notification generated to inform them that they have received new information. In a query-based exchange, the HCP pulls information from the repositories of other organisations by searching for specific information. As physicians have reported significantly higher rates of satisfaction with pushed data than pulled data, use of a direct exchange may be seen as a facilitator of data sharing. (27) There is still a role for pulling data from a query-based exchange, particularly in the context of unplanned presentations to emergency departments where access to primary care records and results of previous investigations are valuable. (19, 27)
(not sure these may need to be expanded…)
A literature review of current studies related to the impact of HIE, from a GPs perspective, treating patients with complex needs was undertaken . Electronic research databases (PubMed, EBSCO, Science Direct…) were searched for articles addressing facilitators and barriers to data sharing between EHRs and HIE’s.
Using Delone and McLeon framework we can evaluate the impact of HIE and provide recommendations based on these finding:
Developing a survey to test our research hypotheses will measure the perceived benefits and challenges of HIE’s from a GP perspective who manage complex patient medical care. These results will highlight the quality of system information and service.
A system development life cycle framework will highlight the expanding functionality of EHRs by GP’s overtime. Using an agile approach introducing functionality to the HIE will allow incremental, iterative sequences to evolve the system. This method will gage use and user satisfaction.
Finally the net benefit of system quality, access and productivity will be analysed. These criteria will be analysed using a mixed method approach to quantify the significance of the HIE impact.
Based on our literature review, we propose a two-part mixed methods study that we would use to confirm our findings. The first part of our study would assess the experience of GPs and specialists using HIE in the care of patients with DM to determine if our findings from our literature review are replicable in the clinical setting.
To date in Ireland, there has been limited uptake of EHRs outside the primary care setting. Therefore, examination of the current status of HIE between EHRs across organisations in Ireland would be difficult as there is little to assess at present. We believe it would be more valuable to assess the experience of clinicians in a structurally similar healthcare system such as the United Kingdom’s National Health Service where comparable standards of medical care are provided with widespread use of EHRs. We would begin by conducting interviews with clinicians to learn about their experience with data sharing. This would help us to explore the situation and identify key themes. Following from this, a survey would be developed and disseminated among HCPs using HIE. This survey would focus on the themes identified in our qualitative analysis of our interviews and with the facilitators and barriers outlined above.
The second part of our study would be a small pilot programme to establish HIE between EHRs in a small group of clinicians, such as one hospital and a small number of local GPs. We would start with limited functionality and slowly build using agile methodology.
**Ref Color Coding (Green: Ciara, Blue: Sharon, Black: Paco)
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