Patient-Centered Collaboration Platform (PC2P)

Globally more than 400 million people suffer with > 7,000 rare diseases. The diagnosis and treatment of rare diseases is often a long and complex journey. Besides rare disease patients (RDPs) themselves, many different stakeholders, such as healthcare providers, insurance companies and specialty pharmacies (i.e. non-patient stakeholders, hereinafter collectively refer to as the NPSs for convenience), may get involved in the journey. Efficiency and transparency in the process may significantly affect treatment outcomes as well as patient experiences. To improve the efficiency and transparency of these processes for managing RDPs, workflow optimization and data sharing is the most important. Due to the complexity and variations of the processes, it is unpractical to expect all the NPSs to adopt an identical workflow that a single IT platform can define well. Therefore, the proposed solution with a collaboration platform aims at providing the most flexibility of workflow customization to the NPSs instead of defining the best workflow. The concept of project-based management is introduced into the solution design which enables and encourage the NPSs to optimize the workflows together based on their collaborations. The solution also provides sufficient convenience and freedom of data sharing which is not only required for improving the efficiency of the processes but also offering transparency to all the NPSs and RDPs.

The proposed PC2P solution is technically to build a patient-focused and project-based collaboration platform for the NPSs. The platform aims at enabling capabilities of dynamically organizing and managing work for them to manage RDPs together. The platform adopts a Trello-like structure composed of team, board, list and card with proper permission assignments (Figure 1a). Members from a NPS or more can form a team. Boards are created for hosting intra-team or inter-team projects of RDP management. Within a board, tasks about a given medical plan and its fulfillment can be collectively defined as a project and organized in a list. In the default interface, a list will be displayed as a column with several task cards. A list can be created by a member of a board, supposedly one from a healthcare provider. For a given list, task cards can be inserted, added, reordered, archived or deleted from the list by members with proper permissions. Templates of projects might be predefined and applied to a list if applicable. Cards are used to define the details of tasks. Functional modules can be applied to a card to carry out specific tasks. For better compatibility with different NPSs’ current workflows and existing IT systems, API will be provided for integration. Patients will be able to gain updates about their cases via a special App but also other methods (Figure 1b). Moreover, sufficient materials and resources will be provided to guide healthcare providers as well as other NPSs which are not familiar with diagnosis and treatment of rare diseases. For further technical details, please refer to the following.

• System: The system was inspired by Trello. It provides a collaboration platform where the processes of RDP management can be dynamically organized and managed. A typical Trello-like structure composed of team, board, list and card is adopted. With proper permission assignments, flat and dynamic management of RDP management can be carried out (see Figure 2).
• Team: A team is used to group members. They are usually from, but not limited to the same NPS. For example, a healthcare provider alone or a healthcare provider and an insurance company can form a team. Team administrators can add members into the team and grant them proper permissions. Team administrators can also create boards for NPS management and invite members from other teams into these boards for collaboration.
• Board: Boards provide a working space for a team or teams. Members belong to a team can create private boards, while members belong to different teams can build a cooperation relationship and share a board. For example, members from a healthcare provider (HCP1), an insurance company (IC1) and a specialty pharmacy (SP1) can share a board HCP1-IC1-SP1 for NPS management processes involving them, while the board might be created and maintained by HCP1.
• List: Within a board, tasks about a medical plan and the following fulfillment can be collectively defined as a project and organized in a list. In the default Trello-like style, a list will be displayed as a column with several task cards. A list can be created by a member of a board, supposedly a physician or a medicine configurator from the healthcare provider. Predefined templates with common tasks might be applied to a list.
• Card: For a given list, task cards can be inserted, added, reordered, archived or deleted from the list by members with proper permissions. Cards are used to define the details of tasks. Functional modules for specific tasks can be applied to a card.
• Template: Frequently adopted processes composed of specific tasks can be defined as templates. Templates then can be applied to a list for quickly arranging tasks, while this list can still be modified later.
• Module: Modules with specific functions can be applied to a card to carry out specific tasks. For example, a delivery module for tracking the status of a biologic drug shipped by a specific carrier to a RDP might be common in need.
• API: While a default user interface will be provided, for better compatibility with different NPSs’ current workflows and existing IT systems, API will be provided for integration. For example, a list of a specific patient can be displayed in the sidebar of the patient’s profile in the hospital information system (HIS), and necessary data exchange and synchronization between the proposed platform and the HIS will be enabled.
• App: Patients will be able to gain details of a project about their cases via a special App. They might also be notified for certain updates of status by SMS, chat bot or phone calls, depending on their preferences and system settings.

(a)

(b)

Figure 1. Overview of the platform. (a) The structure of the system, and (b) Methods for different stakeholders to access the platform.

(a)(b)(c)

Figure 2. Example layout of the system. (a) Teams and boards, (b) Lists and cards in a board, and (c) Details in a card. (taken from the operational process of Trello)

As an IT platform, PC2P serves patients who are suffering with rare diseases by creating a collaboration space for relevant non-patient stakeholders who get involved in their journey of seeking diagnosis and treatment. The target population covers more than 400 million people globally but the solution may be implemented first in certain countries with mature conditions, such as the US. The solution is expected to improve the effectiveness and transparency in the processes of managing rare diseases, to enhance the rare disease patients’ experiences or satisfactions and eventually help improve the quality of their life.

The proposed solution is just at the very early concept stage. Interactions with the and patients and NPS communities have been started.

The proposed solution is currently only at the concept stage. Winning this Challenge helps raise funds and resources for recruiting a team and building a prototype.