The Care Planning Workgroup of the S&I Framework is attempting to achieve consensus on the following document:

HIT Enabled Care Management & Coordination

 In a

Reformed Health Care System

Who we are

            The Standards and Interoperability Framework Transfers of Care Initiative (ToC) has over 135 members representing 109 organizations.  These team members have addressed ambiguities in Meaningful Use Stage 1 and foreseen Stage 2 requirements of information to be exchanged in transition of care.   The ToC Initiative members have been focused in several workgroups.  These work groups include:  Use Cases and Requirements, Architecture and Implementation, Reference Implementation and Pilots, Clinical Information Model and vocabulary, Standards Analysis, CDA Harmonization and CDA Documentation. 

What we did/produced

            Collectively the ToC Initiative members have:

·         Indentified and developed relevant use cases and function requirements supporting the business needs for exchange and interoperability

·         Created Transitions of Care deployment models to evaluate how the Transitions of Care specification would function

·         Identified the policies, services, and other dependencies that are needed to ensure that a Transitions of Care specification is implementable

·         Created a harmonized information model that shows provider-to-provider clinical information exchange (as aligned to the Transitions of Care)

·         Identified the vocabulary elements and value sets needed to support the Transitions of Care Clinical Information Model

·         Identified the core standards and implementation guides for use in the Transitions of Care specification

·         Conducted an analysis of existing standards and implementation guides against the Transitions of Care Use Case Requirements

·         Indentified and harmonized the CDA Header, Section and Entry issues.
Conducted a proof of concept by completely and accurately modeling in UML the CDA Header, 5 Meaningful Use Sections, plus Immunizations and Vital Signs

·         Developed a reference implementation

·         Initiated plans for perform demonstrations and pilots of the tools developed

·         Published an HL7 defined Draft Standards for Trial Use (DSTU)

·         Determined a strategy for addressing the impact on HITSP documents. 

There are many detailed deliverables resulting from the work of the multiple workgroups.  Of specific interest to this discussion is a set of content elements believed to be core elements to accompany a patient with any and all transitions of care produced by The Clinical Information Model and Vocabulary work group.  In addition, this team has identified a framework and additional data elements specific to a care summary and a minimal care plan. 

What is this document?

This document is in response to verbal conversations between ToC team leadership and members with members of the ONC.  We are responding to the request to summarize and articulate meaningful conversations surrounding care management and the coordination of care through each patient’s transition between care settings.   The discovery process used to determine essential data elements to include during care transitions made references to current and potential care processes were impossible to avoid.  The ToC initiative did not have “Care Processes” as part of their scope and limited the deliverables accordingly.  Several aspects of care processes were unavoidably discovered by this broadly configured team and merit reporting to the ONC. 

What we found

The discussions of the ToC Initiative work groups have identified several issues adversely affecting the management and coordination of care for patients transitioning through care settings and care givers.   Meeting our national goals for quality of care, the health of populations, and slowing of cost growth, as articulated in the National Quality Strategy, requires more effective and patient-centered coordination of care than is presently experienced by most patients.  To build on the successes attained by those who developed chronic disease management and case management for the sickest patients, the effort to address the current fragmentation of care for the broader range of patients using healthcare IT and the interoperability framework reveal major obstacles, including:

·         Lack of a designated and recognized care team lead and/or coordinator in many provider settings.

·         Lack of consistent interoperable documentation of key data.  Including but not limited to essential patient information such as medications ordered and immunizations received, as well as supportive data such as formal documentation of the care team members.

·         Lack of effective communication between successive providers, by providers between care settings at transitions of care, and with patients and their families. 

·         Low level of adoption of electronic records both by primary care practices and other providers, including specialist physicians and other disciplines and care settings. 

·         The need for a significant paradigm shift in patient and family engagement in health care, including their access to information and of electronic tools and contribution of key information by the patient (or patient proxy) that are critical for top quality care.

·         The availability and uptake of interoperable Personal Health Records (PHRs) patient portals, and other means for patients to exchange information with EHRs is sub-optimal.

Possible solutions

For clinical care to be the most effective at the lowest cost the ToC Initiative workgroup believes care team coordination to be essential.  In addition, we believe to maximize care management and coordination the following needs to be in place. 

·         Recognized and established care team appropriate to the patient’s individual needs with a recognized care coordinator/leader

·         An up to date “master” care plan including all data relevant to and necessary for the individual patients care

·         Effective communication tools promoting timely, accurate and complete communication between the patient and/or patient proxy and all care givers

·         Effective integration of patient generated information into the workflow of providers and all caregivers

·         The ability to interact with and view the master care plan at the appropriate level of detail by each care giver and by the patient or patient proxy

·         The ability for the patient, patient proxy and care team members to reconcile and update the care plan as needed to keep it accurate and relevant to the patient’s needs at all times.

Care Team and Leadership

Central to the notion of patient-centered, well-coordinated care is the concept of team based care.  Since each patient has unique needs and spends the majority of his or her time outside of the health care system, effective implementation calls for a team that is unique for each patient.  The care team spans not only the providers within a medical home practice, but also additional (specialist) providers who are caring for the individual, as well as the patient, family caregivers and community resources.  Roles, coordination of roles and responsibilities within these complex teams must be clear. In many instances there must be an individual with responsibility for ensuring that all the tasks in the plan come together in the most effective way.  In most cases, the primary care physician would be responsible for managing the execution of the care plan.  But there are situations in which a specialist, other clinical professional, non-physician provider, the patient themselves, family caregiver or other patient proxy would take that role.  This fluid assignment of care management recognizes the continuing movement of care from and between inpatient, ambulatory and home care.

Master Care Plan

An effective care plan, and the exchange of critical pieces of patient information are essential for reducing the fragmentation of the health care system and achieving the goals of the National Quality Strategy.  In the context of team-based care, a master care planning document is an essential tool, and is described in models for patient centered medical homes as a whole-patient care plan.  The master care plan is a particularly useful tool for maximizing quality of care for complex/high risk patients. It is also a part of advanced primary care practice initiatives. A hallmark of a patient-centered, holistic care plan is that it is longitudinal and created by the collaborative efforts of the various members of the patient’s care team and across settings of care, in cooperation with the patient and family caregivers.   The holistic care plan accompanies the patient to all care arenas and is reconciled, updated and managed at the correct level of detail for the patient at the current site of care. 

Clinical Summaries, hospital discharge summaries, hospital discharge instructions, and recommendations by specialists after evaluation of a patient serve as adjuncts to the care plan. Clinical summaries and hospital discharge summaries are, in essence, plans for a patient’s care with a narrow focus on a specific encounter with a health care provider (outpatient/ambulatory provider or hospital, respectively).   Additional elements of these encounters, such as findings and relevant test results and discharge instructions, should contribute to building and maintaining the dynamic master care plan. The summary documents are snapshots representing the patient’s health state at the time of a transition of care as well as pertinent recent care provided. The master care plan however is a dynamic document that is expected to change and be updated, as a result of periodic assessment of a patient's status, patient self reported status, and progress and as a result of unexpected events such as hospitalization. Both summary documents and the master care plan are necessary components of more effective care coordination.

Patients can and should be encouraged to provide observations and patient-reported outcomes data as part of building and maintaining their care plan. For example, reporting patient history, family history, psycho-social history, preferences, and values and contributing updates related to home testing, drug adherence, functional status, quality of life and updated personal health goals and are critical components of both effective care planning and patient engagement. Information from the home environment as a “setting of care” is critical, since ongoing management of wellness and chronic illnesses occurs outside of the health care system in the patient’s home.   Reduction of unnecessary readmissions and better stewardship of our health care resources requires that care planning extend beyond the walls of the health care system to be a continuous process that is responsive to individual patients’ needs.  This is not possible without incorporating information from patients and their caregivers in the care plan.  Additionally, important documents like advance directives or medical power of attorney – when they exist - should be included in or accompany patient care plans.  Care plans may also include standing orders or patient directives that accompany the care plan documentation and support the patient in many care settings.

Future states of the care plan would ideally be virtual, existing “in the cloud” and belonging to the individual patient.  Current realities of technology and adoption dictate that in the current era, the care plan will be a more localized electronic document. The master document would typically be maintained dynamically in the EHR system of the care setting where the patient is currently receiving care.  Consistent with current practice updates to documents are sent to all participants in the form of an electronic CC or fax when EHR systems are not available.  When the patient transfers to a new or “next” care setting the master care plan would accompany the patient and be established in the EHR of the new care setting.   This requires reconciling the master care plan, not only specific sections of the master care plan such as the medication or problem lists at each transfer of care. 

            Communication

Essential to achieving the goal of coordinated care is effective communication between all care team members, including the patient and the care givers in their home environment.  While extremely useful in facilitating better communication between care team members, unformatted messages should not replace the exchange of clinical summaries and consult summaries. Existing observation and result standards currently employed in EHRs can and should be used for standardized documentation of patient generated observations, results and demographic updates. 

            Interoperability

Interoperability is clearly a critical factor in facilitating this new, more effective and more integrated approach to care.  Therefore, specification of standards for interoperability around care plan data elements, as well as care summary data elements is essential.  Structured data elements representing types of interventions not typically recorded in EHRs, such as goals, patient education or instruction, and referral follow-up need to be articulated, existing standards identified, and gaps clearly defined. Creating interoperability between the care plan documents in provider systems and technologies used by patients and their family caregivers (such as PHRs, patient portals, future mobile technologies, etc.) is a vital component of advancing patient engagement.  Giving the patient access to their health information and control over its distribution, providing an enduring copy of instructions within the context of the holistic care plan, including provider actions, and enabling exchange of patient self-management plans are all essential for reaching the goals of the National Quality Strategy.  Such interoperability would also allow the potential “translation” of this information by software services that address health literacy and preferred language requirements.

The Standards and Interoperability Framework Transitions of Care community is working to enable this interoperability for both clinical summary documents and care plan elements. We are developing a roadmap to more robust interoperability between systems around care plan elements.  Currently steps in that roadmap include:

·         Leveraging the Care Plan sections of CCR and CCD standards, which focus primarily on discharge instructions.  Investigating how the Direct Project could provide a means of facilitating secure messaging between all team members

·         Determining if the Direct Project is sufficient for enabling effective communication between care team members and patients and their family care givers in the home environment.

·         Identifying existing standards that could be used for care planning data elements and whether they are adequate for the kind of data exchange and distillation of data required by this approach

·         Defining what new standards are necessary to fill identified gaps, especially in reporting functions which would produce summary documents at transitions of care.

·         Identifying existing standards that can be used to include patient generated observations, results, pre-visit questionnaires, and demographic changes.

·         Leveraging existing standards to allow for attachments to care plans to be considered at all points of care such as patient directives, standing orders, powers of attorney, and Health Risk Assessment results. 

Patient Access to Portable Health Information (view and download)

The importance of patient engagement in overall care coordination is well recognized by the inclusion of the ability to view and download information via a web-based portal as a Stage 2 Meaningful Use criterion.  There is great potential – and need – for innovation in technologies to help patients and their caregivers use their health information to be active participants in managing their health, and the “view and download” criteria take the critical step of providing access for patients to their own data.

The ToC Initiative Workgroup purports the use of data standards for technologies used by patients are essential to enable the interoperability so essential to patient engagement in using these technologies.  The specific data standards applied need to be carefully considered.  If appropriate, data standards already established and used in EHRs should be used.  If current existing standards are not sufficient, development of appropriate standards should be pursued.  Developers and providers of technologies to be used by patients should be strongly encouraged to participate in and employ standards that promote interoperability with the EHRs. 

Open Issues

            Discussion within the ToC Initiative Workgroup uncovered several issues, and many possible solutions were identified.  There are a few issues, however, that remain open and require further consideration. 

1.     “Ownership” of an individual patient’s healthcare information has been and continues to be highly debated.  The ToC Initiative workgroup acknowledges multiple parties may claim “ownership” to the care plan but is not taking a stance on the solution.  “Ownership” of care plan related data is not as pertinent as the “Custodian” to the management and coordination of the care plan data.   

2.     “Custodian” of the patient’s individualized care plan.  Practicality demands that at many care sites, the patient will not be the person doing the bulk of the data entry and updates.  This brings to question who is the current custodian of the patient’s care plan at any given moment? 

Are updates made only by an assigned care team lead?  With this model updates would be made from care summaries and perhaps “mini” or focused care plans submitted by other care givers to the assigned care team lead.  Or, alternatively is the current caregiver also the current custodian of the care plan?  Is there a culture where the “master” care plan accompanies the patient to all sites of care with updates made to pertinent data for that encounter by that caregiver?

3.     Reconciliation of conflicting information. It is inevitable with multiple care givers contributing to the master patient care plan there will be duplicate and/or conflicting information found when reconciling the care plan from care setting to care setting.  Determining which data should be kept and what should be archived will require smart business rules to be built into the reconciliation process. 

4.     Presentation of most pertinent information.  Many caregivers prefer seeing only patient information that is pertinent to the care they are providing.  For example, the cardiac surgeon is not often interested in the patient’s chronic condition of gout.  If the master care plan is to accompany the patient to all sites of care the individual caregivers system must seamlessly accommodate specialty specific views as well as overall master care plan views. 

5.     How to manage “updated information”; is the old information lost, archived, or included in summary document somehow? Where is it stored/presented? In addition, each caregiver must be respectful of other care team members and not update, or delete information from the master care plan that is not of interest to them. 

6.     Process and workflow of care coordination between caregivers and care sites.  Current siloed approaches fragment care.  Patients often seek care from multiple providers or caregivers for their various health issues.  Clinical providers and professionals are often not even aware of other care team members involved in the patient’s overall care.  Establishing the care team more formally, especially within the care plan was discussed earlier.  The ToC Initiative Workgroup has not addressed workflow and processes to make the management and coordination of care between multiple caregivers smooth and seamless.  It is important to note however that workflow and processes should capitalize on the strength of electronic tools and not require care givers or other support personnel to hand enter data that already exists in an electronic form. 

7.     Migration Path.  Care management and care coordination today is a very paper based and siloed process.  To get to the virtual well coordinated efficient master care plan there needs to be recognition of where care processes are today and where they need to be in the future.  A venue should be created to determine the migration path from today to the future desired care management and coordination.  The effort applied to determining a migration path for care management and coordination through a master care plan may be very applicable to other care processes as well. 

The Care Planning Workgroup is attempting to achieve consensus on the following document:

HIT Enabled Care Management & Coordination

 In a

Reformed Health Care System

Who we are

            The Standards and Interoperability Framework Transfers of Care Initiative (ToC) has over 135 members representing 109 organizations.  These team members have addressed ambiguities in Meaningful Use Stage 1 and foreseen Stage 2 requirements of information to be exchanged in transition of care.   The ToC Initiative members have been focused in several workgroups.  These work groups include:  Use Cases and Requirements, Architecture and Implementation, Reference Implementation and Pilots, Clinical Information Model and vocabulary, Standards Analysis, CDA Harmonization and CDA Documentation. 

What we did/produced

            Collectively the ToC Initiative members have:

·         Indentified and developed relevant use cases and function requirements supporting the business needs for exchange and interoperability

·         Created Transitions of Care deployment models to evaluate how the Transitions of Care specification would function

·         Identified the policies, services, and other dependencies that are needed to ensure that a Transitions of Care specification is implementable

·         Created a harmonized information model that shows provider-to-provider clinical information exchange (as aligned to the Transitions of Care)

·         Identified the vocabulary elements and value sets needed to support the Transitions of Care Clinical Information Model

·         Identified the core standards and implementation guides for use in the Transitions of Care specification

·         Conducted an analysis of existing standards and implementation guides against the Transitions of Care Use Case Requirements

·         Indentified and harmonized the CDA Header, Section and Entry issues.
Conducted a proof of concept by completely and accurately modeling in UML the CDA Header, 5 Meaningful Use Sections, plus Immunizations and Vital Signs

·         Developed a reference implementation

·         Initiated plans for perform demonstrations and pilots of the tools developed

·         Published an HL7 defined Draft Standards for Trial Use (DSTU)

·         Determined a strategy for addressing the impact on HITSP documents. 

There are many detailed deliverables resulting from the work of the multiple workgroups.  Of specific interest to this discussion is a set of content elements believed to be core elements to accompany a patient with any and all transitions of care produced by The Clinical Information Model and Vocabulary work group.  In addition, this team has identified a framework and additional data elements specific to a care summary and a minimal care plan. 

What is this document?

This document is in response to verbal conversations between ToC team leadership and members with members of the ONC.  We are responding to the request to summarize and articulate meaningful conversations surrounding care management and the coordination of care through each patient’s transition between care settings.   The discovery process used to determine essential data elements to include during care transitions made references to current and potential care processes were impossible to avoid.  The ToC initiative did not have “Care Processes” as part of their scope and limited the deliverables accordingly.  Several aspects of care processes were unavoidably discovered by this broadly configured team and merit reporting to the ONC. 

What we found

The discussions of the ToC Initiative work groups have identified several issues adversely affecting the management and coordination of care for patients transitioning through care settings and care givers.   Meeting our national goals for quality of care, the health of populations, and slowing of cost growth, as articulated in the National Quality Strategy, requires more effective and patient-centered coordination of care than is presently experienced by most patients.  To build on the successes attained by those who developed chronic disease management and case management for the sickest patients, the effort to address the current fragmentation of care for the broader range of patients using healthcare IT and the interoperability framework reveal major obstacles, including:

·         Lack of a designated and recognized care team lead and/or coordinator in many provider settings.

·         Lack of consistent interoperable documentation of key data.  Including but not limited to essential patient information such as medications ordered and immunizations received, as well as supportive data such as formal documentation of the care team members.

·         Lack of effective communication between successive providers, by providers between care settings at transitions of care, and with patients and their families. 

·         Low level of adoption of electronic records both by primary care practices and other providers, including specialist physicians and other disciplines and care settings. 

·         The need for a significant paradigm shift in patient and family engagement in health care, including their access to information and of electronic tools and contribution of key information by the patient (or patient proxy) that are critical for top quality care.

·         The availability and uptake of interoperable Personal Health Records (PHRs) patient portals, and other means for patients to exchange information with EHRs is sub-optimal.

Possible solutions

For clinical care to be the most effective at the lowest cost the ToC Initiative workgroup believes care team coordination to be essential.  In addition, we believe to maximize care management and coordination the following needs to be in place. 

·         Recognized and established care team appropriate to the patient’s individual needs with a recognized care coordinator/leader

·         An up to date “master” care plan including all data relevant to and necessary for the individual patients care

·         Effective communication tools promoting timely, accurate and complete communication between the patient and/or patient proxy and all care givers

·         Effective integration of patient generated information into the workflow of providers and all caregivers

·         The ability to interact with and view the master care plan at the appropriate level of detail by each care giver and by the patient or patient proxy

·         The ability for the patient, patient proxy and care team members to reconcile and update the care plan as needed to keep it accurate and relevant to the patient’s needs at all times.

Care Team and Leadership

Central to the notion of patient-centered, well-coordinated care is the concept of team based care.  Since each patient has unique needs and spends the majority of his or her time outside of the health care system, effective implementation calls for a team that is unique for each patient.  The care team spans not only the providers within a medical home practice, but also additional (specialist) providers who are caring for the individual, as well as the patient, family caregivers and community resources.  Roles, coordination of roles and responsibilities within these complex teams must be clear. In many instances there must be an individual with responsibility for ensuring that all the tasks in the plan come together in the most effective way.  In most cases, the primary care physician would be responsible for managing the execution of the care plan.  But there are situations in which a specialist, other clinical professional, non-physician provider, the patient themselves, family caregiver or other patient proxy would take that role.  This fluid assignment of care management recognizes the continuing movement of care from and between inpatient, ambulatory and home care.

Master Care Plan

An effective care plan, and the exchange of critical pieces of patient information are essential for reducing the fragmentation of the health care system and achieving the goals of the National Quality Strategy.  In the context of team-based care, a master care planning document is an essential tool, and is described in models for patient centered medical homes as a whole-patient care plan.  The master care plan is a particularly useful tool for maximizing quality of care for complex/high risk patients. It is also a part of advanced primary care practice initiatives. A hallmark of a patient-centered, holistic care plan is that it is longitudinal and created by the collaborative efforts of the various members of the patient’s care team and across settings of care, in cooperation with the patient and family caregivers.   The holistic care plan accompanies the patient to all care arenas and is reconciled, updated and managed at the correct level of detail for the patient at the current site of care. 

Clinical Summaries, hospital discharge summaries, hospital discharge instructions, and recommendations by specialists after evaluation of a patient serve as adjuncts to the care plan. Clinical summaries and hospital discharge summaries are, in essence, plans for a patient’s care with a narrow focus on a specific encounter with a health care provider (outpatient/ambulatory provider or hospital, respectively).   Additional elements of these encounters, such as findings and relevant test results and discharge instructions, should contribute to building and maintaining the dynamic master care plan. The summary documents are snapshots representing the patient’s health state at the time of a transition of care as well as pertinent recent care provided. The master care plan however is a dynamic document that is expected to change and be updated, as a result of periodic assessment of a patient's status, patient self reported status, and progress and as a result of unexpected events such as hospitalization. Both summary documents and the master care plan are necessary components of more effective care coordination.

Patients can and should be encouraged to provide observations and patient-reported outcomes data as part of building and maintaining their care plan. For example, reporting patient history, family history, psycho-social history, preferences, and values and contributing updates related to home testing, drug adherence, functional status, quality of life and updated personal health goals and are critical components of both effective care planning and patient engagement. Information from the home environment as a “setting of care” is critical, since ongoing management of wellness and chronic illnesses occurs outside of the health care system in the patient’s home.   Reduction of unnecessary readmissions and better stewardship of our health care resources requires that care planning extend beyond the walls of the health care system to be a continuous process that is responsive to individual patients’ needs.  This is not possible without incorporating information from patients and their caregivers in the care plan.  Additionally, important documents like advance directives or medical power of attorney – when they exist - should be included in or accompany patient care plans.  Care plans may also include standing orders or patient directives that accompany the care plan documentation and support the patient in many care settings.

Future states of the care plan would ideally be virtual, existing “in the cloud” and belonging to the individual patient.  Current realities of technology and adoption dictate that in the current era, the care plan will be a more localized electronic document. The master document would typically be maintained dynamically in the EHR system of the care setting where the patient is currently receiving care.  Consistent with current practice updates to documents are sent to all participants in the form of an electronic CC or fax when EHR systems are not available.  When the patient transfers to a new or “next” care setting the master care plan would accompany the patient and be established in the EHR of the new care setting.   This requires reconciling the master care plan, not only specific sections of the master care plan such as the medication or problem lists at each transfer of care.

            Communication

Essential to achieving the goal of coordinated care is effective communication between all care team members, including the patient and the care givers in their home environment.  While extremely useful in facilitating better communication between care team members, unformatted messages should not replace the exchange of clinical summaries and consult summaries. Existing observation and result standards currently employed in EHRs can and should be used for standardized documentation of patient generated observations, results and demographic updates.

            Interoperability

Interoperability is clearly a critical factor in facilitating this new, more effective and more integrated approach to care.  Therefore, specification of standards for interoperability around care plan data elements, as well as care summary data elements is essential.  Structured data elements representing types of interventions not typically recorded in EHRs, such as goals, patient education or instruction, and referral follow-up need to be articulated, existing standards identified, and gaps clearly defined. Creating interoperability between the care plan documents in provider systems and technologies used by patients and their family caregivers (such as PHRs, patient portals, future mobile technologies, etc.) is a vital component of advancing patient engagement.  Giving the patient access to their health information and control over its distribution, providing an enduring copy of instructions within the context of the holistic care plan, including provider actions, and enabling exchange of patient self-management plans are all essential for reaching the goals of the National Quality Strategy.  Such interoperability would also allow the potential “translation” of this information by software services that address health literacy and preferred language requirements.

The Standards and Interoperability Framework Transitions of Care community is working to enable this interoperability for both clinical summary documents and care plan elements. We are developing a roadmap to more robust interoperability between systems around care plan elements.  Currently steps in that roadmap include:

·         Leveraging the Care Plan sections of CCR and CCD standards, which focus primarily on discharge instructions.  Investigating how the Direct Project could provide a means of facilitating secure messaging between all team members

·         Determining if the Direct Project is sufficient for enabling effective communication between care team members and patients and their family care givers in the home environment.

·         Identifying existing standards that could be used for care planning data elements and whether they are adequate for the kind of data exchange and distillation of data required by this approach

·         Defining what new standards are necessary to fill identified gaps, especially in reporting functions which would produce summary documents at transitions of care.

·         Identifying existing standards that can be used to include patient generated observations, results, pre-visit questionnaires, and demographic changes.

·         Leveraging existing standards to allow for attachments to care plans to be considered at all points of care such as patient directives, standing orders, powers of attorney, and Health Risk Assessment results. 

Patient Access to Portable Health Information (view and download)

The importance of patient engagement in overall care coordination is well recognized by the inclusion of the ability to view and download information via a web-based portal as a Stage 2 Meaningful Use criterion.  There is great potential – and need – for innovation in technologies to help patients and their caregivers use their health information to be active participants in managing their health, and the “view and download” criteria take the critical step of providing access for patients to their own data.

The ToC Initiative Workgroup purports the use of data standards for technologies used by patients are essential to enable the interoperability so essential to patient engagement in using these technologies.  The specific data standards applied need to be carefully considered.  If appropriate, data standards already established and used in EHRs should be used.  If current existing standards are not sufficient, development of appropriate standards should be pursued.  Developers and providers of technologies to be used by patients should be strongly encouraged to participate in and employ standards that promote interoperability with the EHRs. 

Open Issues

            Discussion within the ToC Initiative Workgroup uncovered several issues, and many possible solutions were identified.  There are a few issues, however, that remain open and require further consideration. 

1.     “Ownership” of an individual patient’s healthcare information has been and continues to be highly debated.  The ToC Initiative workgroup acknowledges multiple parties may claim “ownership” to the care plan but is not taking a stance on the solution.  “Ownership” of care plan related data is not as pertinent as the “Custodian” to the management and coordination of the care plan data.   

2.     “Custodian” of the patient’s individualized care plan.  Practicality demands that at many care sites, the patient will not be the person doing the bulk of the data entry and updates.  This brings to question who is the current custodian of the patient’s care plan at any given moment? 

Are updates made only by an assigned care team lead?  With this model updates would be made from care summaries and perhaps “mini” or focused care plans submitted by other care givers to the assigned care team lead.  Or, alternatively is the current caregiver also the current custodian of the care plan?  Is there a culture where the “master” care plan accompanies the patient to all sites of care with updates made to pertinent data for that encounter by that caregiver?

3.     Reconciliation of conflicting information. It is inevitable with multiple care givers contributing to the master patient care plan there will be duplicate and/or conflicting information found when reconciling the care plan from care setting to care setting.  Determining which data should be kept and what should be archived will require smart business rules to be built into the reconciliation process. 

4.     Presentation of most pertinent information.  Many caregivers prefer seeing only patient information that is pertinent to the care they are providing.  For example, the cardiac surgeon is not often interested in the patient’s chronic condition of gout.  If the master care plan is to accompany the patient to all sites of care the individual caregivers system must seamlessly accommodate specialty specific views as well as overall master care plan views. 

5.     How to manage “updated information”; is the old information lost, archived, or included in summary document somehow? Where is it stored/presented? In addition, each caregiver must be respectful of other care team members and not update, or delete information from the master care plan that is not of interest to them. 

6.     Process and workflow of care coordination between caregivers and care sites.  Current siloed approaches fragment care.  Patients often seek care from multiple providers or caregivers for their various health issues.  Clinical providers and professionals are often not even aware of other care team members involved in the patient’s overall care.  Establishing the care team more formally, especially within the care plan was discussed earlier.  The ToC Initiative Workgroup has not addressed workflow and processes to make the management and coordination of care between multiple caregivers smooth and seamless.  It is important to note however that workflow and processes should capitalize on the strength of electronic tools and not require care givers or other support personnel to hand enter data that already exists in an electronic form. 

7.     Migration Path.  Care management and care coordination today is a very paper based and siloed process.  To get to the virtual well coordinated efficient master care plan there needs to be recognition of where care processes are today and where they need to be in the future.  A venue should be created to determine the migration path from today to the future desired care management and coordination.  The effort applied to determining a migration path for care management and coordination through a master care plan may be very applicable to other care processes as well.