Within the last 6 years, the IDND has been a competitive force in the development and delivery of new and innovative dementia care research. In turn, research founded and supported by the IDND has yielded multiple journal publications and invitations to present work at seminars and conferences throughout the nation. Despite early successes, the IDND has not been paralyzed by its early achievements but has preserved its momentum and is continuing to evolve to meet the changing needs of the community it serves.
As the IDND moves forward in creating and achieving new goals, it has much to learn about the history and successes of other community- and practice-based research networks. Although the infrastructures of Contract Research Organizations and PBRNs vary widely, they do share some common elements. Both have a mission statement, a director, support staff, communication processes, and a community advisory board.23
As the membership and diversity of the IDND have continued to grow, the network has been successful in its rigorous adherence to its original mission and goals while maintaining complexity. As with other community research networks, the IDND’s mission and goals are narrow and specific. The IDND’s primary focus is dementia research and dissemination.
However, the research supported by the IDND has been conceptualized, executed, and led largely by the IDND network director; collaborative efforts among the IDND group members have been limited to recruitment and dissemination. This is not due to a lack of support from the IDND leadership in encouraging IDND members to explore their own research interests; rather, it is perhaps due to lack of guidance. Within the last year, the network responded to this by establishing a governing body and patient advisory board to assist members at any point along the research timeline (ie, grant proposal, study design, recruitment, data collection and analysis, and implementation).
As already outlined, the IDND Governing Body and Patient Advisory Board were developed to guide the IDND members in their research development and implementation. Unlike other research networks with elaborate leadership panels and established bylaws, the Governing Body and Advisory Board have limited decision-making power. Guidelines were developed but only to document the developmental process of the Governing Body and Patient Advisory Board and to define the roles of each for the network members. It is at the discretion of the investigator and research study team to respond to advice given. Although not a requirement among all community networks, patient representation within the IDND ensures patient input in the decision-making process and project development. Unlike other patient advisory boards, which are restricted to patients only or patients with specific forms of dementia or disease, the IDND’s definition of “patient” includes the informal caregiver, allowing the IDND to develop research that addresses the needs of both. Although the functions of the Governing Body and Patient Advisory Board for IDND continue to be defined, even in their juvenile state, both groups have already made significant contributions to the IDND.
For most networks, funding is a constant obstacle, which can limit the degree of size, outreach, and direction of network growth.25
The IDND is sponsored by the Regenstrief Institute, Inc, and IUCAR, which support the bimonthly meetings and the administrative infrastructure of the network. Any research grants, educational programs, or quality improvement projects generated by a member of the network are routed via the member-affiliated organizations. These organizations either receive the grants directly or operationalize the educational or clinical program. The network has functioned as a facilitator or catalyst for grant generation and clinical or educational program development. Other research networks, such as the Alzheimer’s Association of Indianapolis, have sponsors and additional financial partners, which allows for flexibility, increased involvement, and a larger societal impact. Although the IDND has the interest and representation of the major health care systems in the Indianapolis area, exploration of additional funding is necessary to translate the IDND into a national model for the building of regional and national dementia networks.
Communication tools vary among networks and include email LISTSERVs, newsletters, websites, and face-to-face meetings.23
For the IDND, information exchange has been unidirectional, primarily through email, newsletters, and the IDND website. With the exception of the regular dinner meetings, most IDND members do not have other opportunities to communicate with the IDND administration and other network members. The use of message boards and e-newsletters has been instrumental for other research networks in increasing information exchange among their members, gaining the interest of new parties, and expansion of research.