1. Introduction

As the medical community improves its understanding of the pathophysiology and acute care treatment of Traumatic Brain Injury (TBI) and Post Traumatic Stress Disorder (PTSD), it is clear that victims often require complex, highly orchestrated long-term care involving a variety of medical and community resources. Family-centered, multidisciplinary approaches, often based on the concept of the medical home, have proven successful in involving patients and their families as active partners in all phases of the patient’s reintroduction into the larger community.

The National Intrepid Center of Excellence (NICoE) is at the forefront of developing and implementing such patient-centered approaches and recognizes that a well-coordinated medical team is only part of the long-term solution. A network of community-based services, working synergistically with medical providers, patients, and their families is also required to successfully transition the combat veterans from the acute care setting to the services and support they will require during their long outpatient rehabilitation. Within the Military Health System (MHS), contract and GS social workers develop the requisite knowledge of community resources over time. They rely heavily on their experience, community contacts, and personalized referrals to help patients and families find appropriate resources. Active Duty staff, due to frequent reassignment and turnover, often lack the in-depth, local visibility required to reintegrate the injured individual in a culturally and socially appropriate manner. This discrepancy results in coordination and access to care problems, particularly in a setting where the number of new patients requiring services is overwhelming the system’s inherent ability to effectively match supply and demand with the individual specificity required for optimal care. Our wounded warriors deserve better, more consistent access to the community resources they require.

2. Proposal: Functional Description

This proposal seeks to bring tools and services to improve the discovery, classification, and qualitative assessment of local resources, giving providers insight into the effectiveness of available community assets and leading to improved, individualized treatment programs. The COGNITIVE Team will develop a methodology, supported by appropriate information technology, enabling a community to systematically catalog, describe and communicate the services and resources that are available. This information will be structured and consumable by both medical and consumer facing applications to improve the dissemination of reliable and actionable information.

Our approach will deliver a fundamentally different resource than the countless websites, resource directories, or other published compendia that simply list organizations and service providers. One need only conduct a Google search for TBI or PTSD resources offered in any large American city to discover hundreds of suggested resources within the community of interest. Finding quality resources in a morass of nearly identical listings, dead-links, and extravagant claims is an overwhelming task. The challenge is not compiling a list of names and addresses, but rather in determining with any degree of granularity how a particular resource might meet the needs of a particular individual patient and their family. The challenge is evaluating and qualitatively grading even a filtered list to ensure that patients are referred to those services that provide evidence-based, reliable, and quality service. Patients and providers have plenty of data, but they have little actionable information.

COGNITIVE Medical Systems will team with BrainMatter-s!, Inc. (a San Diego-based, 501(c) (3) organization focused on TBI and PTSD) to develop a systematic approach with which to catalog and consistently describe community resources. These assets will be graded using a variety of techniques described in more detail below and will be made available as a Community Resource Service that consumer and clinical applications can leverage at the point of service. The proposed service will help ensure care providers, patients and families have reliable, actionable information regarding resources within a community so that appropriate, multi-disciplinary care plans can be tailored to the needs of a specific patient.

Our approach is based on a collaborative, community based approach to peer review and evaluation. Pioneered by social media sites such as Facebook and LinkedIn, and subsequently commercialized by the likes of Amazon and Angie’s List, the use of social networks to peer review products and services has proven value in providing guidance and actionable data to consumers. We propose using the same approach to cataloging and “grading” medical resources within a community using a more structured evaluation process.

The peer-review process recognizes that the primary customers (patients ad providers) often have orthogonal goals and standards for evaluation. Patients are particularly interested in the experiences of other patients, with the value perceived by others affected by the same condition, and by intangibles such as “feeling comfortable”, “convenience”, and “friendliness”. Medical efficacy and best clinical practice are also important, but without specific training, patients have difficulty evaluating a resource using these more “scientific” criteria.

Providers, on the other hand, take a more empiric approach, demanding that resources elucidate their “school of thought”, their “treatment protocols”, and their “outcomes”. Anecdotal experiences, while considered, are rarely sufficient to convince a medical profession to recommend a resource unless it originates from their peers.

The approach envisioned for developing the Community Resource Service respect these perspectives and would start with an initial “boots on the ground” grass roots effort to thoroughly catalog community available services. Using Internet search engines, structured interviews of case managers / social workers working at local medical facilities, and careful surveys of TBI/PTSD patients and families, we will compile a comprehensive list of currently available resources and services in the San Diego community. These resources will be cataloged and cross-referenced using a core set of indices we will develop to standardize the search and retrieval of content.

Patients and their families will be encouraged to grade each resource, allowing their cumulative experience to “grade” the service provider using traditional semi-structured evaluation criteria. In separate and clinically structured survey process, validated medical providers will be able to evaluate their own, professional experience with each resource, enabling the medical community to develop a corpus information that provide reliable, peer-reviewed information that they can use when making referral recommendations. .

The combination of both a patient-centric and a clinical evaluation process will provide a valuable 360 review of the resources available for the continued support and rehabilitation of TBI and PTSD patients. We intend to make this information available to patients and their families in a community portal designed to help them search for and evaluate of quality resources, while simultaneously providing educational material to facilitate their development into informed consumers of medical service, empowered to participate critically in their healthcare.

COGNITIVE will also develop tools and methods for making Community Resource Service information available within AHLTA so that providers have ready access to quality information at the point of care. A simple menu item in the client navigation tree can provide access to a general search tool enabling providers to conduct ad hock queries as needed. We also propose leveraging the COGNITIVE Rule and Workflow engine to analyze patient medical data and identify a short list of resources matched to an individual’s clinical condition. These resources would be made available as tailored recommendations made available to the provider when accessing a patient’s record or sent to the care team as Clinical Decision Support alerts.

This consumer/profession assessment approach is not without precedent – the non-profit GreatSchools.org utilizes a similar strategy to help educators and parent assess the quality of schools within a community. The program, which started in the Bay area, is now available in all fifty states. It is estimated that over 50 % of military families consult the site when they relocate or PCS.

3. Proposal: Technical Approach

The community services to be cataloged include, but are not limited to:

Residential housing assistance
Vocational assistance and training
Chemical dependency services
Mental health services and counseling
Legal assistance
Financial consultation
Leisure and recreation groups
Support groups
- County and state social and human services

This basic descriptive meta-data will be supplemented with information regarding the “quality” and “reputation” of the resource as perceived by the medical community, the patient, and the service organizations themselves. The intent is to provide a 360-degree assessment of available resources and any characteristics that might help in matching one service vice another to a particular patient. This meta-data will be standards-based and semantically constrained. Where appropriate, HL7 terminologies (ICD9, SNOMED, LOINC, etc.) will be used; when required, SNOMED compliant extensions will be created to adequately represent the range of services available to caregivers.

We propose exposing the Community Resource Service as an Infobutton-compliant content provider. “Infobuttons” are context-specific links from one information system (usually a clinical information systems such as an electronic health record) to some other resource that provides information that might be relevant to the initial context. Infobuttons are used to anticipate users’ information needs and provide them with easy ways to obtain answers to resolve those needs. For example, a nurse reviewing a patient’s laboratory results may wish to know the implications of a particular result.

The use of this HL7 standard at the service interface boundary, will ensure a decoupled architecture without costly proprietary dependencies, and will allow the NICOE to leverage the existing MHS/VA capital investment in Infobutton infrastructure effectively. It will also enable BrainMatter-s! to provide resource information to other medical organizations within the San Diego community, furthering its charter to help improve the outcomes and quality of life of TBI/PTSD patients regardless of etiology or demographic.

To ensure the Community Resource Service is effective and provides actionable information at the point of care, we will create two Infobutton clients. The first is a module designed for the MHS AHLTA client and the medical staff that are attempting to coordinate care for an injured patient. This Infobutton will expose community resources with the metadata required to assess the clinical appropriateness of the services provided; points-of-contact, telephone numbers, fax numbers, benefits, etc. that a provider needs when making a referral will also be available.

The second Infobutton client will be web-based and patient focused. The meta-data exposed will be less clinical and more appropriate for the non-medical consumer. 360-degree clinical data will be still provided to the patient, but “insider” referral management information will be replaced with more general contact information. Both tools will request and retrieve context appropriate information from the Community Resource Service.

As a final deliverable, COGNITIVE proposes to develop Resource Utilization Metrics that will evaluate not only the quality of the cataloged resources, but also the effectiveness of the program within the Direct Care environment, and the service usage patterns by patients and their families.

4. Conclusion

Our approach will lead to the development of an online catalog and registration tool whereby organizations, providers, and services can self-register, and where communities can evaluate/assess the quality/effectiveness of a resource. Unlike a traditional “content” provider, the information collated and presented by the Community Resource Service will be developed by the community, for the community and will rely on a more collaborative, peer-reviewed sustainment and quality control model managed and guided by the COGNITIVE team. If successful in San Diego, we believe communities throughout the United States can apply this model and that it is applicable to conditions other than TBI and PTSD.