1. Introduction As New Zealand strives for a regional shared patient record we are in an ideal position to benefit from the lessons learnt by the established HIEs in the United States. There is widespread agreement that sharing health information is a good thing. It has been the topic of more than one HINZ seminar over the last few years and was reiterated in the Horn report of 2009 which stated that Health professionals across the different institutional settings would find it much easier to provide seamless care if they shared easy access to a common patient record. (1) Unfortunately there is also widespread agreement that sharing health information is a hard thing to do. New Zealand is not the only country struggling to find a way forward to the goal of sharing the patient record. During my recent 16-month relocation to Boston I witnessed the same challenges being discussed and addressed at a State and Federal level across the United States. The initial driver in the US for shared patient records came from the Institute of Medicine (IOM) who, in their report Crossing the Quality Chasm , identified a statement of purpose for healthcare. Articulated as improvement aims, healthcare should be safe, effective, patient-centred, timely, efficient and equitable. (2) To enable this improvement the institute formulated a set of ten general principles to inform efforts to redesign the health system. Principle number 4 is &quot;Knowledge is shared and information flows freely&quot;(2) The IOM went on to identify areas where change should take place articulating that Information technology holds enormous potential for transforming the health care delivery system. (2)
The first successful attempts to share patient records in the US came in the form of RHIOs, Regional Health Information Organisations. A RHIO is a geographically defined group of organisations with a business stake in improving the quality, safety and efficiency of healthcare delivery. (3) As an entity the RHIO establishes and operates a Health Information Exchange (HIE). HIE is defined as the infrastructure that mobilises health information electronically across organisations within a region or community. A HIE provides the capability to electronically move clinical information between disparate health care information systems while maintaining the meaning of the information being exchanged. The goal of HIE is to facilitate access to and retrieval of clinical data to meet the IOM improvement aims of safer, more timely, efficient, effective, equitable and patient-centred care (4). In the words of United States President Barack Obama &quot;HIEs are critical to ensuring that we do not move from paper-based silos to electronic silos.” (5) In 2009, the goal of sharing knowledge received a boost with the American Recovery and Reinvestment Act (ARRA), which has made funding available to expand state-level health information exchanges as part of developing the Nationwide Health Information Network. In March 2010, The Office of the National Coordinator (ONC) completed the announcement of State Health Information (State HIE) Exchange Cooperative Agreement Program awardees. In total, 56 states, eligible territories, and qualified State Designated Entities (SDE) received awards. The total is US$548million. With so much at stake, the United States has good reason to ensure successful HIE implementations.
Success Factors New Zealand can benefit from looking at some of the established HIEs and reviewing the lessons they have learnt in their journey to achieve a Shared Patient Record, in particular the following 6 critical success factors have been identified: Stakeholder Engagement Governance Purpose, Vision and Mission Scope of Information exchanged Exchange Method Scope of Services: Audit, Security and Privacy.
Stakeholder engagement The success of a HIE is dependent on developing and sustaining stakeholder buy-in and participation (6). Efforts across stakeholders need to be coordinated to create trust and consensus on an approach for a regional HIE. Stakeholders will develop and provide services that are meaningful to them. This, in, turn, will determine the success of the HIE implementation (7). This approach should include determining resource allocation and defining mechanisms for accountability (6). Health Information Exchange planning in Illinois was based on the idea that exchange will work best if all the eventual partners in the Exchange participate in its creation. Therefore, the HIE planning process should involve a wide and diverse group of healthcare providers and health information users, including physicians, medical practices, hospitals, local health departments, consumer representatives, laboratories and diagnostic imagers, pharmacies and behavioural health, etc (8). Effective stakeholder input will be generated from a mix of expertise, diverse perspectives, interest, support and buy-in, responsibility and influence (9). The Michigan Coalition for HIT identified the State as having a role to play as a neutral facilitator to convene stakeholders and facilitate stakeholder discussion. Their goal for State involvement was to align stakeholders to create a “we agree” list for all stakeholders to sign. This would include statements about the type of info that will be exchanged, the format, definitions of terminology and the diseases that will be the initial focus of the HIE (6)
Governance Effective stakeholder engagement leads to governance. The prevailing current HIE governance “models” in the United States are considered to be on a continuum and were the topic of a presentation by the Director of the State-level HIE Consensus Project on behalf of the American Health Information Management Association earlier this year (10). The advantages on disadvantages of each model as presented are summarised below State Government provides governance and infrastructure for HIE e.g. Delaware Health Information Network. Potential Advantages May help small entities or those entities with limited ability to leverage investments from the stakeholders across the health sector Potential to use existing government infrastructure, resources, and privacy policies to implement HIE services Addresses concerns about multiple entities managing health record data. Potential Disadvantages Political influences may impede the multi-sector, multi-stakeholder coordination and collaboration required as part of effective HIE governance Bureaucracy of slow political and public agency processes may impede levels of flexibility required for governance structure and HIE development to evolve Procurement: Government control and agency processes may inhibit procurements, and private sector investments and innovations. Non-governmental entity provides governance and technical operations according to government-established requirements e.g. Rhode Island and New York State HIEs. Potential Advantages Takes advantage of an HIO entity with expertise and “social capital” among diverse stakeholders to develop and operate HIE governance and technical operations Allows the use of private capital to finance the HIO activities Takes advantage of potential government economic regulatory functions to leverage performance, establish rewards, and finance system upgrades. Potential Disadvantages Political processes and timelines must be navigated to establish formal government requirements which may impede the speed with which HIE governance and operations can be established Private sector will and capital must be mobilized to assure adequate investments in a sustainable and effective HIE organizational infrastructure Government must provide adequate ongoing oversight and be prepared to intercede if private-sector organizational capacity were to fail. Independent non-profit entity provides governance and directly provides or brokers technical operations with government collaboration e.g. Massachusetts (6) Potential Advantages Allows for both public and private-sector inputs and accountability functions Promotes innovation in both private and public sectors. Potential Disadvantages Success will require private and public/private-sector HIEs to police themselves State funding will impact its ability to participate in the governance of any private-sector HIE organisations Should the HIE fail after receiving public investments the Government's role is unclear Sustainable business models for HIE are currently lacking. Whichever model is applicable, the key functions of a governance entity are the same (10): Provide customer and stakeholder value by generating the multi-stakeholder buy-in and trust required to foster public-private collaboration Ensure financial viability and HIE infrastructure sustainability Defining accountabilities, oversight provisions, and protocols to create organisational credibility Earn public and consumer trust by maintaining transparency to show that the public benefit is served in an appropriate and secure way.
Purpose, Vision and Mission Knowing the purpose (why you are doing it) and the vision (where you want to get to) helps you to determine your mission (how you are going to get there). The Rhode Island HIE believes that the invaluable foundation for successful HIE development is stakeholder investment in the purpose, vision and mission which they describe as “social capital”(10). For them, social capital provides an approach to achieving HIE implementation with agreement in principle for the role HIE will play to transform health: community-wide quality improvement (11). In 2009, the state implemented their HIE 'currentcare'. This secure network allows authorised health care practitioners to view more of their patients' most up-to-date health information in one place. An independent study indicates that, once fully operational, Rhode Island's HIE will generate a return on investment by reducing medical errors, duplicate tests and adverse drug reactions conservatively estimated to be $108 million annually (9). To date, over 23,000 patients and 100 physician offices and hospitals in Rhode Island have signed up to participate in this free service. (9). In Maine the Mission of their HIE &quot;HealthInfoNet&quot; is to develop, promote and sustain an integrated, secure and reliable regional information network dedicated to delivering authorised, rapid access to person-specific healthcare data across points of care (12). The state of Maine currently has the largest operating state-wide exchange in the USA in relation to population (13). They currently have about 665,000 lives in the database, which is about half the population of the state, and they service 15 hospitals and a large group practice that serves as a test bed for ambulatory care. Those represent about 52% of annual ER visits in the state and about 50% of discharges (13).
Scope of information exchanged: Start small Starting small and then broadening the data sharing as the scope of the HIE expands brings early wins and increases participation. In 1998 in Massachusetts, the New England Health Exchange Network (NEHEN) started with eligibility and benefits checking involving payor/provider information exchange. In 2009 they merged with MA-SHARE (Simplifying Healthcare Among Regional Entities)(14). Since its inception, MA-SHARE has tackled a number of challenging projects (14): MedsInfo-ED – retrieving medication histories for emergency room patients Record Locator Service – identifying where patient medical records reside National Health Information Network (NHIN) Architecture Prototype – one of four projects nationally demonstrating how electronic health records can be developed across multiple states Rx Gateway – a live electronic prescribing solution for MA-SHARE providers Clinical Data Exchange (CDX) – a live exchange routing standard clinical summaries among MA-SHARE participants. Today these two Massachusetts based initiatives represent 55+ hospitals, 5,000+ physicians and 12 regional and national payers and planned Future Joint Services include (14): Referral consultation routing Medication history reconciliation Quality / performance data routing Personal health record (PHR) routing. In their white paper &quot;State-wide HIE: Best practice insights from the field”, the authors advocate taking 'baby steps' with the goal to 'Go Live with Something' (5). They state, &quot;Nothing is ever going to be perfect, including your HIE network pilot. The natural urge of every HIE team is to tweak the grand design toward perfection, at the expense of launching something small and manageable that reveals a wealth of information you can use in your long-term plans. The team should spend its money making something happen and should foster a sense of urgency on your team of stakeholders to get something into the pilot phase, but that pilot should be small and manageable so you can learn something valuable at an affordable cost.&quot; (5) Maine HIE chose Patient Identifier and Demographics, Encounter History, Laboratory Results, Radiology Reports and Patient Consent Management for their first phase (12).
Promote interoperability through the use of standards Interoperability is the ability to share data among health care providers and it is key to sharing health care information electronically (15). Interoperability enables different information systems or components to exchange information and to use the information that has been exchanged. This capability is important because it allows patients’ electronic health information to move with them from provider to provider, regardless of where the information originated. If electronic health records conform to interoperability standards, they can be created, managed, and consulted by authorised clinicians and staff across more than one health care organisation, thus providing patients and their caregivers the necessary information required for optimal care.(15) Any level of interoperability depends on the use of agreed-upon standards, for example, vocabulary standards provide common definitions and codes for medical terms and determine how information will be documented for diagnoses and procedures (15). Another example is messaging standards, which establish the order and sequence of data during transmission and provide for the uniform and predictable electronic exchange of data (15). For over a decade, the Department of Veterans Affairs (VA) and the Department of Defense (DOD) have been engaged in efforts to improve their ability to share electronic health information (15). They have agreed upon numerous common standards that allow them to share health data. Their profile includes federal standards (such as data standards established by the Food and Drug Administration and security standards established by the National Institute of Standards and Technology); industry standards (such as wireless communications standards established by the Institute of Electrical and Electronics Engineers and Web file sharing standards established by the American National Standards Institute); international standards (such as the Systematized Nomenclature of Medicine Clinical Terms, or SNOMED CT, and security standards established by the International Organization for Standardization) (15). The DOD and the VA are currently sharing data on over 27,000 patients (15). For this reason the Ohio Health Information Partnership (OHIP) is committed to the principle of Standards-Based, Incremental Interoperability. Their technical model will support all nationally-recognized data code sets and exchange standards for each respective architectural layer (technical, privacy and security, clinical context, administrative context, NHIN connectivity) and will allow providers to incrementally progress from basic data exchange to full integration capability with their EMR (16).
Scope of Services: Audit, Security and Privacy As the model of healthcare delivery has changed over time, so too has the way we apply audit, security and privacy over a patient’s clinical information. 20th Century health care operated on an enterprise model where there was 1-on-1 physician-patient relationship Paper records Incident-by-incident decisions Point-to-point exchanges. In the 21st century there is a new paradigm of integrated health care where there is Multiple providers Coordination of care Electronic records Interconnected, interoperable technology Many-to-many exchanges.
The Maine HIE project identified the challenge of going from an enterprise model to an integrated model because the concepts of audit and audit responsibility didn't transition well (12). To address this challenge Maine identified guiding principles that led to standards for minimum levels of security for all entities participating in the HIE (12). Each HIE participant retains ownership of its own data Data use is restricted to supporting treatment between point of service Each participant is responsible for user authorisation, access monitoring and sanction management HealthInfoNet serves as the agent for participants in managing consumer opt-out process Access limited to users authorised by each participating organisation Physical access limited to connection through sanctioned participant’s EMRs and dedicated virtual private network connection Role-based access with challenge to define user relationship to patient and to validate consent to access individual patient information Comprehensive audit structure with access extended to each participating organisation’s security team.
The goal of an HIE is to make pertinent health information available for the good of the patient but to provide that information only to the right people. How this is managed without infringing on privacy rights is a delicate matter. Managing consent carefully is vital to protect the rights of the patient, without impeding patient participation (5). Review of the literature indicates the following trends and emerging consent processes (5,17,18) States appear to favour opt out Patient authorisation may be withdrawn at any time The number of patients opting out is generally small Role-based access restrictions can provide an extra level of security Mental health, and sexual health documents are often secured at the document level but sharing is permitted for treatment via a &quot;break the glass&quot; policy. In April 2009 Maine had 348,000 lives in the HIE State-wide Master Person Index with only 1,496 Opt Outs (0.5%) (25).
What does this mean for New Zealand? Governance is an important issue for New Zealand. In comparison to the United States we have a publically funded or socialist healthcare model and as such will rely on the Government to provide governance and infrastructure for sharing health information at a national level. Existing infrastructure should be utilised to create and engage with stakeholders. New Zealand should also consider the advice to ‘start small. Looking at what type of health information is consistently being captured in a structured way across the majority of DHBs would add significant value in terms of data quality and provide early benefits. Finally, adopting an opt out enrolment model will ensure that a larger percentage of New Zealanders benefit from health information sharing.
The challenges in establishing a successful state level HIE parallel many of the complexities that New Zealand will face as it moves towards the goal of a shared patient record. The literature referencing established HIEs in the Untited States has shown that the critical success factors for sharing patient information include: Stakeholder Engagement Governance Purpose, Vision and Mission Scope of Information exchanged Exchange Method Scope of Services: Audit, Security and Privacy. New Zealand can benefit from considering recommendations made by those States with established HIEs and from continuing to watch the 'HIE space' as more projects commence in line with the American Recovery and Reinvestment Act stimulus funding.
Sharing Health Information: What can we learn from a Health Information Exchange?
Sharing Health Information: What can we learn from a Health Information Exchange? Chris Stevens – Product Manager HINZ 2010
Sharing Health Information <ul><li>Shared patient record=better patient care </li></ul><ul><li>Sharing health information is challenging </li></ul><ul><li>Information technology is the key </li></ul>
Health Information Exchange <ul><li>RHIOs </li></ul><ul><li>HIEs </li></ul><ul><ul><li>"HIEs are critical to ensuring that we do not move from paper-based silos to electronic silos.” – President Barack Obama </li></ul></ul><ul><li>ARRA </li></ul><ul><ul><li>Focused on Meaningful Use </li></ul></ul>
Success factors <ul><li>Stakeholder Engagement </li></ul><ul><li>Governance </li></ul><ul><li>Purpose, Vision and Mission </li></ul><ul><li>Scope of Information exchanged </li></ul><ul><li>Exchange Method </li></ul><ul><li>Scope of Services: Audit, Security and Privacy. </li></ul>
Stakeholder Engagement <ul><li>Effective stakeholders are </li></ul><ul><ul><li>Representative </li></ul></ul><ul><ul><li>Co-ordinated </li></ul></ul><ul><ul><li>Accountable </li></ul></ul><ul><li>Creating </li></ul><ul><ul><li>Trust </li></ul></ul><ul><ul><li>Consensus </li></ul></ul><ul><ul><li>Services that are meaningful to the region </li></ul></ul><ul><ul><li>Appropriate resource allocation </li></ul></ul>
Governance <ul><li>Dependent on effective stakeholder engagement </li></ul><ul><li>Governance models: </li></ul><ul><ul><li>State Government provides governance and infrastructure </li></ul></ul><ul><ul><li>Non-governmental entity provides governance and technical operations according to government-established requirements </li></ul></ul><ul><ul><li>Independent non-profit entity provides governance and directly provides or brokers technical operations with government collaboration </li></ul></ul>
Purpose + Vision = Mission <ul><li>Rhode Island </li></ul><ul><li>“ community-wide quality improvement” </li></ul><ul><li>Maine </li></ul><ul><li>“ develop, promote and sustain an integrated, secure and reliable regional information network dedicated to delivering authorised, rapid access to person-specific healthcare data across points of care “ </li></ul>
Scope of Information Exchanged <ul><li>Start small </li></ul><ul><li>Quality not quantity </li></ul>
Interoperability and Standards <ul><li>Interoperability is the key to sharing health data electronically </li></ul><ul><li>Standards enable interoperability </li></ul>
Healthcare delivery is changing 21 st Century INTEGRATED 20 th Century ENTERPRISE
Audit and Security <ul><li>As healthcare delivery changes so do the requirements for audit and security </li></ul><ul><li>Developing a set of guiding principles helps the transition from an enterprise to an integrated model </li></ul>
Privacy and Consent <ul><li>Opt-out is the favoured model </li></ul><ul><li>Role-based access restrictions </li></ul><ul><li>“ Break the glass” policy </li></ul>
What can we learn? <ul><li>Governance </li></ul><ul><li>Leverage existing infrastructure </li></ul><ul><li>Start small: quality not quantity </li></ul><ul><li>Adopt opt-out enrollment model </li></ul>
Thank you <ul><li>Meeting the Challenge: Enhancing Sustainability and the Patient and Consumer Experience within the Current Legislative Framework for Health and Disability Services in New Zealand Report of the Ministerial Review Group 31 July 2009 </li></ul><ul><li>Crossing the Quality Chasm: A New Health System for the 21st Century. Committee on Quality of Health Care in America , Institute of Medicine 2001 </li></ul><ul><li>http://www.himss.org/ASP/topics_rhio.asp Accessed 25/05/2010 </li></ul><ul><li>http://en.wikipedia.org/wiki/Health_information_exchange Accessed 25/06/2010 </li></ul><ul><li>White Paper: Statewide Health Information exchange: Best Practice insights from the field. Matthew Bates, MPH Vik Kheterpal , MD. March 2010 </li></ul><ul><li>Health IT and HIE Initiative Governance: Establishing the Medicaid Presence within the State HIE Governance Structure: A Workshop for Medicaid/CHIP Agencies . Lynn Dierker, RN, Director, SLHIE Project, American Health Information Management Association (AHIMA), Rick Shoup, PhD, Executive Director, Massachusetts eHealth Institute, Phil Poley, MA, Chief Operating Officer, Massachusetts Medicaid. Web-based workshop, February 25, 2010 </li></ul><ul><li>State HIE Cooperative Agreement Program Presentation, Michigan Coalition for HIT, September 18, 2009 </li></ul><ul><li>http://illinois-hie.wikispaces.com/Plan+Domain+2+-+Stakeholder+Collaboration+and+Engagement Accessed 28/05/2010 </li></ul><ul><li>Small state, big ideas: Rhode Island on reform , Amy Gallagher March 1, 2010 http://ebn.benefitnews.com </li></ul><ul><li>State HIE Governance Implications for Medicaid/CHIP Agencies, February 25, 2010 Lynn Dierker, RN </li></ul><ul><li>State-Level Efforts to Advance Health Information Exchange Update from the SLHIE Consensus Project HIMSS RHIO Roundtable May 15, 2008 Lynn Dierker, RN </li></ul><ul><li>HealthInfoNet Overview Veterans Administration Augusta, Maine April 28, 2009 </li></ul><ul><li>Q&A: Maine HIE works through a variety of challenges http://www.cmio.net/index.php?option=com_articles&view=article&id=20823&division=cmio Accessed 25/06/20104. </li></ul><ul><li>Hitech's impact on Health Information Exchanges: Key Decision points fpr privacy and security, Jared Rhoads, July 2009 </li></ul><ul><li>United States Government Accountability Office, Testimony Before the Subcommittee on Military Construction, Veterans’ Affairs, and Related Agencies; House Committee on Appropriations. Information Technology Challenges Remain for VA’s Sharing of Electronic Health Records with DOD. Statement of Valerie C. Melvin, Director Information Management and Human Capital Issues. March 12, 2009 </li></ul><ul><li>http://ohiponline.org/ohip.hierfi.tech.principles.pdf Accessed 21/06/201 </li></ul><ul><li>How 21stCentury Technology May Affect Informed Consent for HIE, Patricia A. Markus, Esq. 2009 </li></ul><ul><li>Privacy & Security Safeguards For Rhode Island’s HIE , Amy Zimmerman, http://dhhs.gov/healthit/ahic/materials/11_07/cps/zimmerman_files/textonly/slide1.html Accessed 23/05/2010. </li></ul>Thank you