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General intro

They participate as research subjects and contribute to a consortium's strategy, governance, and operations. Many consortia involve patient advocates as members of their standing governance committees or have a separate patient advisory committee that provides input on all research efforts.

Involving patient advocates in multi-stakeholder consortia

These groups serve essential roles in communicating the value proposition of the consortia to patients to encourage participation and support. (general: communicating with patient communities)

some consortia have taken advantage of the intellectual capital that advocates can contribute to help with the design and pursuit of research questions.

Communicate the mission and outcomes of the consortium to the patient population and public

describe research progress

create dialogues with stakeholders


How to share data for the common good. You enable (terms of engagement) by doing these things.

Collect, annotate, and pool data following standardized procedures, Developing an effective informatics infrastructure, The methods used to share data and other information, from informal and infrequent, to standardized, systematic, and timely., The type and format of the shared data, from raw data from a clinical trial to summaries of data provided as a publication or presentation., How to address standards and interoperability?, technical infrastructure, Decide on requirements for common data languages and interoperable platforms, the data are formatted in a manner that permits sharing across platforms, decide on data ontologies for creating a shared vocabulary and defining relationships among datasets

Ensure the quality of the original data. How to perform quality control?, Factors to consider, implementation of proper quality assurance/quality control measures at different stages of collection and analysis,, quality of resources, ,, institutional infrastructure, and investigator expertise., Options to consider, adopting principles of good laboratory practices (GLP), which standardize the procedures used to collect, handle, and analyze biospecimens, and also include a requirement to track and trace the data back to the original analytical source., utilize a third party to perform quality control and standardization of data before they are shared within the collaboration

Develop guidelines for sharing research data with the public, Address timing and manner of dissemination. Examples:, Unconditional and immediate release of data and tools, Immediate release of data to external researchers with proper qualifications and objectives, Release of data after sponsor-exclusive time period, Release of summarized results, Publications and presentations, How to mitigate concerns about inappropriate or irresponsible use of data? (if released to the public), how to address patient privacy and /or ethical concerns?


Make agreements and set policies on intellectual property, licensing, and commercialization to ensure transparency and set expectations.

Define the competitive and precompetitive boundaries., Is the focus on direct development of products?, drugs, informatics platforms, devices, Is the focus on advancing scientific knowledge, developing broadly used biomarkers, or on creating research tools such as standards and frameworks?

Address the following kinds of IP:, Background IP, Def.: pre-existing inventions or data that are owned by one of the participants and are intended for use as part of the consortium's research activities, Consortium-generated, IP generated over the course of a collaboration -- even for precompetitive consortia, What if?, What if a new partner is added or one exits before the completion of the project, How will you maintain and enforce IP after the conclusion of the consortium?, What if the partnership terminates prior to the completion of a project?, How will you ensure proper IP management?, Data?, Will you consider data generated to be protectable IP?


How to recruit and retain talented individuals to comprise a multi-sector team?

Which members /individuals are we talking about? What positions must be filled?, program staff members, high-level leaders from sponsoring organizations, exec committee and /or board members, midlevel leaders, steering committee members, governance and advisory board members, leadership team of the consortia; public face of it, project team members, those provided as part of a sponsor's in-kind contribution, volunteers

How to delegate responsibilities that are appropriate? Which responsibilities are we talking about? What skills or attributes are needed? The work to be done, and the skills and attributes needed to do it., leadership from sponsoring organizations, Higher-level, Enthusiasm, Buy-in, Focus, Mid-level, technical expertise, time, connection to leader for follow through, consortium leadership, understand and appreciate the real-world challenges addressed by the collaboration, as well as have credibility to the external communities, since they also play a pivotal role in sustaining sponsorships and gaining new participants., Here we're talking full-time employment. Managing the consortium., what sorts of project management skills are needed? (to coordinate the collaboration and ensure the momentum of the research efforts), subject matter expertise, project mgr -- e.g., hitting milestones, communicating, focus on goals -- expertise, people skills, volunteers, volunteer time and intellectual capacity to the project

How to match those with incentives that motivate their participation?, when do you define incentives?, what formal or informal mechanisms do you use to achieve team cohesiveness?

How to mitigate staff turnover?


Possible funding sources

government grants

industry financing

membership fees

contributions from nonprofit foundations

individual donations

fundraising events

philanthropic endowments

private sponsorships

Possible expenses

fiscal reserves, unexpected costs or delays

operational expenses

Common DIVERSIFIED FINANCIAL MODELS employed -- by sector initiating the collaboration

Funding characteristic based on who initiates the collaboration:, Government, Industry, Patient advocacy group /Foundation, Third-party organization


How do sponsors and participants validate that their contribs of time and resources are being used efficiently and effectively?

Measure the effectiveness of the collaboration model, a reflection of all projects taken together, Assess at three phases of development: start-up, steady-state, and wind-down.

Gain and strengthen support of specific audiences by tailoring impact statements

Assess /evaluate progress toward intended outputs, Develop metrics to evaluate progress at all stages

Assess /evaluate outcomes of the collaboration, Time frame, mid-term, consider using methods to summarize mid-term value and impact, long-term, after consortium's lifespan; retrospective assessment, Examples of outcomes, accelerating the development of a cure for a specific disease, creating broadly used tools and methods, economic growth


To define how we (partners) intend to work together, we'll need to:

1. Clearly define our goals, To provide a foundation for the consortium's activities..., Develop scientific research questions and milestones., Common mission objectives (by initiating sector):, Government, Address gap in R&D infrastructure, job/company creation, regulatory and policy changes, Industry, Address operational inefficiency in industry, job/ company creation, harmonization through standards development, data-sharing, Foundation, Accelerate drug development for specific disease, provide research resources for research community, riskbenefit assessments, Third-Party Organization, Address unmet scientific needs, provide tools that can be broadly used to accelerate innovations

2. Outline decision-making authorities and management responsiiblities, Governance: What questions must you answer?, Who's responsible for governing?, Who / what do they oversee?, What are their responsibilities?, To whom do they report?, Who makes up their members?, Typical governance and program management structures (organized by initiating sector)


How will metrics be used to provide real-time feedback, and how will these impact the trajectory of the consortium?

What accountability measures must be in place to track progress and impact? Some specific examples:

Equitable and timely contributions of resources and effort from all participants

Scientific milestones on research projects

Strategic milestones on consortium progress toward mission

Other strategic measures and mission-driven considerations

Procedures to ensure return-on-investment to participants and sponsors

Are there external factors that must be considered in the near- and long-term that could potentially shift the focus of the consortium or alter the nature of the partnership?


What assets and resources can each partner bring to the effort?

What policies and practices can each partner agree to, regarding:


Intellectual property?

Conflict of interest?



Data Access?

What resources are needed to augment existing assets? How do you access those external resources?


Who are my partners? What incentives drive each of the organizations partaking in this consortium?

Do we share an unmet need that can advance both a shared goal and our unique individual objectives?

Can we coalesce around a shared vision for moving forward?

What are the outputs and outcomes of this effort? Who are the beneficiaries? Is this consortium created to provide data, tools, and resources to benefit all partners and the broader research community?