DATA SHARING COLLABORATIVES

Data Sharing Collaboratives: The Importance of Sharing DataINTRODUCTION . . . . . . . . . . . . . . . . . . . . . . . . . 5 Managing information can bring several benefits to your community data sharing collaborative project 6
Equity 6
Stimulates innovation and growth 6
Improve service delivery to community members 6
Why Data Sharing Collaboratives for United Ways 7
What is a Data Sharing Collaborative (DSC)? 7
How to Use This Toolkit 7
Guideline for Data Sharing/Information Exchange Projects 7
Types of Data Sharing and Focus of the Toolkit 8
Resource Databases 8
Shared Measurement 8
Screenings & Assessments 9
Care Coordination 9
Advocacy & Innovation 9
CENTERING ON EQUITY . . . . . . . . . . . . . . . . . . . 11 Centering Equity in Data Sharing Collaborative Initiatives 12
Data Sharing Collaboratives from a Community Members Perspective 12
211 Connection in Equity 13
Centering Equity Tips for United Ways 13
DEFINING UNITED WAY’S RATIONALE & ROLE . . . . . . . 15 Navigating Your United Way’s Role 16
Determining Rationale & Role Tips for United Ways 17
STAKEHOLDER BUY-IN . . . . . . . . . . . . . . . . . . . . 19 Sectors to consider 20
Consider Partners 20
Developing New Partnerships 20
Involving Community Voice 21
Engaging an individual(s) trusted by marginalized groups to be a part of the Governance Structure 21
Prioritizing Internal Champions 21
Creating Mutual Trust 21
Maintaining Partner Participation 22
Cultivate External/Community Champions 22
Aspects to consider include 28
Equity in Financial Planning 29
Financial Tips for United Ways 29
211 Connection in Financial Planning 29
Table of Contents
Equity in Governance 32
Developing Your Values 33
Foundational Agreements for Data Sharing Collaboratives 34
Memorandum of Agreements/Understanding 34
Release of Information 34
211 Connection in Governance 36
DATA, TECHNOLOGY PLATFORMS AND INFRASTRUCTURE . . . . . . . . . . . . . . . . . . . 39
Equity in Data Technology Platforms and Infrastructure 40
Data Infrastructure 41
Resource Data and 211 National Platform 43
Platform Capabilities 43
Developing Workflows 44
Data Technology Platforms and Infrastructure Tips for United Ways 44
211 Connection Data Technology Platforms and Infrastructure 45
DATA ANALYSIS . . . . . . . . . . . . . . . . . . . . . . . 47 Data Visualization and Analysis Tools 48
Equity in Data Analysis 48
Individual Level Data 48
SDoH Screening Tools 49
Tiered Partnership Structure 49
Care Coordination Continuum 49
Aggregated Data Sets 50
Tracking Your Progress 50
COMMUNICATIONS . . . . . . . . . . . . . . . . . . . . . . 53 Equity in Communications 53
Communications and Marketing 54
Multi Modal Fundraising Plans 58
Financial Sustainability Tips for United Ways 59
APPENDIX . . . . . . . . . . . . . . . . . . . . . . . . . . . 61 Glossary 61
Steering Committee Attendance 66
inform decision-making and make predictions about the future. Gold isn’t valuable in its raw
state. First, it needs to be processed and manipulated into jewelry. Similarly, data is not as
valuable when raw, unanalyzed and used in isolation. By sharing data, we unlock additional
value and accelerate innovation.
Data sharing is vital to promoting the health, education, and financial stability of every member of a community It is essential because it can enhance decision-making capabilities, build learning organizations and finally, stimulate cultural change and innovation Cross- sector data sharing enables communities to use individual and community-level information to understand acute community needs and lead to improved services, systems, and practices Collaborative learning leads to developing innovative policies and interventions and, ultimately, builds stronger communities
Increasingly, local and state United Ways are embracing data sharing as a core function of their modern community impact work as they convene or partner on collective impact initiatives seeking to drive equitable, person-centered impact Given the benefits of data sharing, many United Ways are partnering on or initiating data sharing collaboratives to drive system-level change for their respective communities
• Deciding to share pertinent information with relevant organizations can have a profound impact on individuals’ lives
• Access to information has the ability to ensure that an individual receives the right services at the right time
• Information can detect emerging needs early enough to prevent them from becoming acute or chronic issues that are more difficult to address
• Rich individual level data that can be disaggregated by race and identity are crucial to understanding and addressing equity issues
• Lack of information is a factor repeatedly flagged up as an issue in case reviews It could be the difference between life and death
Where there are concerns about the safety of an adult/child, sharing information in a timely and effective manner between organizations can reduce the risk of harm
Managing information can bring several benefits to your community data sharing collaborative project:
EQUITY Data sharing collaboratives can provide leadership in addressing systemic, structural, and institutional inequity By using data appropriately, communities can understand and effectively communicate about current and past structural and institutional patterns of discrimination and inequality, build greater awareness, and make the case for actions that advance equity Using data, especially disaggregated data, can be key to identify root causes of issues and to create equity-specific impact goals and strategies
ENABLE BETTER AND FASTER DECISION MAKING When individuals or families are facing barriers or you have to solve a community issue, the first steps taken are often to analyze trends, understand systemic barriers or plan new strategies Information is needed in order to support such activities, but information overload can make this process difficult One solution is to share information in a single community repository, which allows decisions to be based on data collected from the actual experiences of the members in your community A shared repository that integrates data on key measures reduces the need to collect data from multiple locations or resources Making decisions and planning actions can be done efficiently if it’s easy to find what you need, when you need it
STIMULATES INNOVATION AND GROWTH Community-based organizations must continually bring in revenue and most philanthropic funding sources require current data on communities in applications and final reporting, but this can be difficult to collect and compute By managing information properly, community organizations gain access to valuable information to demonstrate needs and show service delivery outcomes and areas of growth as a result of investments
IMPROVE SERVICE DELIVERY TO COMMUNITY MEMBERS Individuals and families appreciate diverse organizations that work together and demonstrate widespread expertise and the ability to use it to their benefit More critically, delivering services at the right time is essential to better serving individuals, families and communities Sharing knowledge and innovation can eliminate redundancy in client intake processes and the time required on the part of clients to complete lengthy forms and interviews, improving efficiency and helping individuals achieve the best outcomes
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Why Data Sharing Collaboratives for United Ways
WHAT IS A DATA SHARING COLLABORATIVE (DSC)? At a high-level, a data sharing collaborative (DSC) is a network of community partners who share data to improve program and system performance towards shared goals For the purposes of this toolkit, we are focused on how local United Ways and 211s share data - grounded in equitable principles - with their own unique network of partners, such as community-based organizations, agency partners, health care and public health institutions, and tribal or governmental partners
HOW TO USE THIS TOOLKIT This toolkit brings together many lessons learned from DSC initiatives around the country It is not intended to be used as a stand-alone document; it provides a summary of the components for initiating and furthering data sharing collaboratives with a lens for United Way engagement, and directs you to additional tools and resources that will support you in developing and strengthening a DSC in your community
This toolkit is for any United Way leader who is: • Considering engaging in a data sharing collaborative • At the early phases of collaboration and looking to round out
knowledge of the components and build equitable foundations • Already implementing or partnering on a DSC and wants to
cross-check core components for promising practices, advice, and a more significant focus on equity
The toolkit is broken into nine sections of planning and action If you are just getting started, we recommend you review and plan for the components largely sequentially As you continue on your data sharing journey, we encourage you to revisit sections as they become more relevant in your planning and implementation The reality is that building and maintaining a collaboration requires regular review and maintenance of all of the sections outlined
Each section has a brief summary of the components, guidance on how to ground in equitable approaches, tips and advice from other United Ways, and resource lists that will allow you to do a deeper dive into actionable activities to help you achieve successful implementation of your data sharing initiative
Throughout the document you’ll also find additional information specific to 211 agencies Of the more than 250 211 call centers, about half are owned or operated by a United Way The remainder are independent organizations that may be crisis centers, state/ government managed or other nonprofits All 211s provide essential information and referral services to communities, which involves the development and maintenance of a community resource database
Guideline for Data Sharing/ Information Exchange Projects:
• Human rights laws and The Data Protection Act 1998 are not barriers to information sharing, instead they provide a framework to ensure personal information is shared appropriately
• Be open and honest with the individual (and/or their family where appropriate) about why, what, how and with whom information will (or could be) shared, and obtain their agreement
• When you are sharing or requesting personal information from someone, be certain of the basis upon which you are doing so Where you have consent, be mindful that an individual might not expect information to be shared
• Safety and well-being should always be considered: it is critical to consider the safety and well-being of the individual and others who may be affected by their actions when making information sharing decisions
• Ensure that the information shared is necessary for the purpose for which you are sharing it, that it is shared only with those individuals who need to have it, is accurate and up-to-date, is shared in a timely fashion, and secured
• See more in the Legally Compliant Framework/Legal Considerations section
Description Goal Benefits Challenges
Resource Databases Information and referral (I&R) resource databases contain regularly updated information on available organizations, programs, and services in a community There are more than 250 211 contact centers across the United States and Canada, of which roughly half are owned or operated by a United Way 211 is an information and referral service with a centralized directory of community resources This resource provides those looking for help with a single point of contact for resources ranging from housing, to utility assistance, to mental health assistance
A comprehensive list of all services available to communities, providing a single database for searching
Providers know where to locate possible services for clients
Clients can get referrals no matter where they access the system
Resources can be duplicative or constantly changing, list needs constant updating
There is often no “closed loop” for providers
Providers don’t work together
Shared Measurement Shared measurement is when multiple organizations track progress or evaluate performance based on a common set of measures A key component of collective impact frameworks, and an element of grantmaking, the practice of data sharing for shared measurement requires alignment in both data collection processes and common definitions for success
Results Based Accountability (RBA) is a framework that informs shared measurement practices, in which community partners track and report corresponding data points to measure the impact of their combined efforts in improving the lives of community members These results may be used in funding investments to individual organizations
Compile data from multiple sources to analyze state of community and set and track goals for improvement
Ability to show community outcomes aggregated from multiple sources or partner organizations
Performance measures and resource gap analysis can help determine community funding priorities
Data is siloed and fragmented, often stored using a variety of methods/ systems with varying levels of quality
Partners capacity to collect or report on data will vary and some may be hesitant, or require coaching/ support, to participate
Requires a deep level of trust among partners, particularly when performance measures have historically felt punitive or would risk funding availability
TYPES OF DATA SHARING AND FOCUS OF THE TOOLKIT There are many approaches to sharing data, and most United Ways already do aspects of this work Some United Ways may be involved in multiple data sharing collaborations with different partners, taking on different roles
Screenings & Assessments Community partners utilize a common screening tool (such as one for food insecurity or other social determinants of health) to help individuals identify and secure holistic care across housing, food, financial supports that can affect health outcomes Data from screeners or assessments is shared between partners, or macro data is used to identify community-wide gaps SDoH screenings are often combined with resource sharing and care coordination
Create screening consistency across sectors and reduce redundancy for clients
Common assessment tools or centralized intake processes create a shared language between partners and shared understanding of participant needs
Common screening tools can support shared measurement practices and increased interoperability
Reduced duplication in processes results in better experiences for clients navigating services across multiple partners
Many systems do not provide information to close the information loop on referrals
Can be challenging to find or create accurate tool(s) that collect relevant data for all partners
Care Coordination At its most robust stage, data sharing for care coordination results in a well-developed system of cross-organization communication that results in more efficient and timely services for clients, improved outcomes, identification of resource gaps in the community, and opportunities to apply for diversified funding as a collaboration
Provide clients with efficient services and referrals to achieve best possible outcomes Providers are able to confer regarding client progress and options to enhance services
Common understanding of participant and community needs
Leverage the expertise and services provided by multiple partners to work together toward client goals
Requires agreed upon processes and roles for all partners involved to be effective
Can be difficult to share information
Referrals can be time consuming, and agency referred has an active role in client success
Advocacy & Innovation Analyzing data gathered for community improvement can help identify groups of services that have the most positive outcomes for community members as well as those that do not At this level, data is used to determine avenues to improve the health, education, and financial stability of every member of a community
Gather and use Information necessary to make decisions on an individual, program and systems level
Used to create policy and system-related decisions to help the community thrive
Can foster informed grantmaking and partnerships that advance community priorities and equitable practices
Takes time and commitment from community stakeholders
Description Goal Benefits Challenges
“Equity starts with the individuals who need and are accessing services United Way can help elevate the data coming out of service requests In data sharing and health equity efforts, United Way is a strong advocate for doing the hard work of examining and using existing data, such as the information and feedback individuals have already provided when seeking services, rather than immediately conducting focus groups or surveys to inform decision making or program design United Way leverages existing data to build frameworks for action then solicits new input to refine strategies and close critical gaps in resources By taking the time to understand what feedback and data people have provided to United Way and its partners prior to asking for new information, United Way has built trust and demonstrated a respect for the time and capacity of community members Improving efficiencies and navigating existing data resources involves working closely with partner agencies to build their capacity to innovate with data ”
Mary Miller United Way of South Hampton Roads
While providing immeasurable insights for positive change, data collection and analysis can
also lead to unintended inequitable results and decision making. When the infrastructure of
the data, including the technology that supports it, neglects history, social norms, or political
framework, it can reinforce racist policies; spur inequitable resource allocation; repeat harm to
communities, and do the opposite of what was intended.
If social service, education, health services, and community members come together to share data to improve processes and services, attention to racial equity must begin during the first conversation and be woven into every step taken subsequently United Ways, in their convener role, are ideally positioned to lead the relationship building that must happen among those represented in the data and those using the data
Centering on Equity
• Health Equity Checklist
• Community Engagement for Collective Action
• How We Collect Data Determines Whose Voice Is Heard
• Counting a Diverse Nation: Disaggregating Data on Race and Ethnicity to Advance a Culture of Health
• What is Health Equity and What Difference Does a Definition Make?
• Advancing Health, Equity, and Well-Being through Community-State Data-Sharing Partnerships: Thought Leader Insights
RESOURCES
DATA SHARING COLLABORATIVES The Importance of Sharing Data
Centering Equity in Data Sharing Collaborative Initiatives To ensure equity in a data sharing collaborative, it is imperative to focus on it from the very beginning of the project Data integration begins and continues in an iterative cycle Thinking through and integrating equity in every phase of this cycle is critical
An effective method for centering equity is to ensure authentic (versus token) community engagement in each phase of the collaborative The first stage towards achieving true community engagement is to review partners’ various definitions of engaging community and establish a clear definition of the term for your collaboration In many organizations engaging the community is the act of informing them of the work being done, asking people to take surveys or conducting focus groups Your team will want to consider more in-depth levels of community voice, such as a community advisory committee, to aid in centering equity in your work The University of New England lists several tiers of engagement to consider:
• Informing the community is the simplest form of engagement and consists of providing information in various forms about the project
• Consulting is the next level, which includes gathering data from as many people affected by your work as possible through surveys, focus groups, etc
• Involving community is achieved through community polls and panels that gather views on a specific topic and provide recommendations regarding possible solutions
• Collaborating with members of the community include actions such as a community task force or hosting an online forum for people to interact with your project and provide insights and feedback
• Empowering community members is the most complex level of engagement that also yields the most potential for ensuring equity in the work This is accomplished by asking people affected by the project to participate in decision-making and/or implementing the actions that are decided upon
Determining at the start of your collaboration which level of engagement you will strive to realize results in cohesion among partners and can facilitate trust with community members that their voice is not only going to be sought after, but it will be heard, respected, and useful to the collaborative
Data Sharing Collaboratives from a Community Members Perspective To access care and thrive, community members navigate many different systems and services When there is a lack of coordination between or within our medical, behavioral health, government and social services systems, community members are faced with many barriers including conflicting information, missed opportunities, duplication and/or lack of adequate services for their needs Data sharing is one way communities can reduce these obstacles States and regions around the country have begun to establish Data Sharing Collaboratives (DSCs) across agencies and sectors to address social determinants of health and deliver whole-person care Since establishing these efforts, the communities are transforming how we deliver services by putting the individual at the center, improving care coordination and outcomes
United Way’s Equity Framework has a helpful and actionable chapter on how to center equity in data-driven community impact work such as data sharing collaboratives
The Actionable Intelligence for Social Policy (AISP) has a useful Tool Kit called A Toolkit for Centering Racial Equity Throughout Data Integration that will be helpful in ensuring you address equity at every stage in data integration from planning to reporting
To ensure equity in a data sharing collaborative, it is imperative to focus on it from the very beginning of the project and intentionally shape the collaborative with equitable foundations That said, if a data sharing initiative has already begun in your community, it’s always worth stepping back and getting it right Engage with stakeholders now about the importance of equity and look at the processes you created Take a retrospective approach and design a plan that will address equity in your data and governance
211 Connection in Equity Used correctly, demographic data collected by 211s can guide efforts to ensure services are equitable in a community Collecting demographic data can also perpetuate problems if not used appropriately Here are a few tips for 211s:
211 can provide demographic data on unmet needs to elected officials and philanthropic organizations to ensure issues are being addressed around COVID-19/healthcare concerns, homelessness, school challenges (i e bullying, afterschool programs) or food insecurity
Use demographic data internally to gauge the effectiveness of outreach, staff training, equity initiatives and database inclusion policies For example, if only 5% of 211 callers are Spanish-speaking/ Latino but your Latino population is closer to 10%, then work can be done to improve outreach, ensure staff is bi-lingual and that resources in the database are inclusive for non-english speakers Or collecting and using gender identity data can spur better partnerships with LGBTQ centers, improve outreach efforts and drive training programs for team members
Partner with consumer groups – especially minority-led groups – to formulate questions for your demographic intake Simply asking questions to satisfy a funder or grant can lead to narrow misrepresentations of the needs in a community
CENTERING EQUITY Tips for United Ways Ensure you have a true understanding of why you are collecting the data (end game/ outcomes) and can clearly communicate this to others as a group
Include diverse stakeholders, thinking beyond just race and ethnicity to age, income level, type of household (single mother, grandparents raising grandchildren, multiracial, etc ), education levels, sexual orientation, religious affiliations, local business owners, etc
Develop an understanding of the local racial, social, and historical context of the data the DSC is using
Bring a critical eye to the data you’re using in your DSC and the assumptions and bias built into that data Does it serve your equity goals?
If you are already into the work and need to prioritize a stronger focus on equity, consider a retrospective evaluation with your steering committee and community to determine where the collaborative can build equity into the governance, processes and protocols
Always make sure the collaborative asks itself what data is actually needed to be informed and make good decisions Collecting data that’s “nice to have” may be invading the privacy of a client base that already has to share private information more frequently than privileged individuals Also, do a thorough review of what already exists Many of the communities in which we work have been surveyed multiple times, and rather than continuing that pattern, we can take advantage of that which exists and use it as a starting point for further research
Consider intersectionality throughout data collection and analysis Racial equity is a major focus of our work; how do outcomes change when considering gender, sexual orientation, disability status, etc ?
CENTERING ON EQUITY
Clarifying Your United Way’s Rationale to Engage
Before diving into a DSC, make sure “you” (your employees, your leadership, and your board)
are all clear as to why you are engaging in this work. As a United Way, there should be clear
ties to how a DSC can enhance your community impact work.
There are many valuable reasons to start or participate in a DSC such as: • Improving equity in the community • Distributing funds, offer services, and prioritize partnerships as a result of improved data; • Providing connections for funded partners to use the funds your United Way grants to them more efficiently for greater impact; • Providing timely, efficient, dignified, and coordinated care to strengthen community members’ health, education, and financial
stability outcomes • Improving United Way’s ability to measure individual outcomes and community level change • Increasing donor awareness of community conditions and the role United Way, and they, can have in making improvements • Pursuing new funding and partnership opportunities that leverage United Way’s convening strength to enhance impact and bring in
new sources of revenue
• The Value of Backbone Organizations in Collective Impact
• Backbone Starter Guide: A Summary of Major Resources about the Backbone
• NNIP’s Guide to Starting a Local Data Intermediary
• A Locally Based Initiative to Support People and Communities by Transformative Use of Data
RESOURCES
Navigating Your United Way’s Role Once you have determined your reasons for engaging in a Data Sharing Collaborative, you must identify what role you will have in the collaborative as well as what resources you will bring to the table There are a variety of roles your United Way might take on within a data sharing partnership, with varying levels of engagement and fiscal responsibility
A Backbone Organization provides a project management role to a collaborative, often also serving as a fiscal agent If taking this role, you will likely be involved with the collaborative from a very early stage
To decide your role, consider how the work of the DSC aligns with and enhances United Way’s mission and strategic plan
Being a Convener means you will bring organizations to the table and help facilitate the progress through the meetings This may coincide with being the Backbone Organization, or the Convener may partner with the Backbone to share the workload Some healthcare partners are increasingly turning to United Way to serve as a neutral convener and providing funding to support the core convening work
As a Partner organization, you will attend meetings, assist in activities that align with your mission, and bring some resources (funding, staff time, data, expertise, etc ) to the collaborative and receive information or data in return
Additional roles for external organizations often include community partner organizations (those that provide direct services), technology partners (often vendors who provide a tool or technology service), and funding partners (those that financially support a DSC)
DETERMINING RATIONALE & ROLE Tips for United Ways Meet with key members of your United Way’s leadership team and the Board of Directors to discuss the benefits of joining a DSC to ensure you have support when proposing it to the entire group Recruit them as internal champions to help others understand the commitments and benefits of a DSC
Review the elements of the Modern United Way to increase understanding of how a DSC can support your organization’s evolution
Talk with other members of the collaborative to identify what role they see United Way taking in the work
Create an “elevator” speech you can use when asked about your participation to help those within your organization share the message externally
Enter your DSC without a preconceived notion of your role Let the partners define that role, and UW’s job is to fill it
If there is not a clear understanding by those representing and supporting your work, confusion could lead to dissent among key decision makers regarding the resources you are allocating to the DSC
DEFINING RATIONALE & ROLE
Amy Grunewaldt Community Collaborations Consulting - My Care Community Initiative,
Linn and Surrounding Counties in Iowa
At the heart of a strong DSC is a purpose that is bigger than the interests of individual
organizations. A successful DSC project must be built in a manner that embraces multiple
interests while serving fundamental community goals. Many communities turn to United Way
because of our role as a neutral convener with the community’s interest in mind.
If the goals of individual partners (to decrease costs of services, reduce duplication of services, etc ) supersede a community-level purpose, it may be challenging to make progress Always return to higher level purpose and community goals as a guiding principle (see more under Governance: Shared Vision and Values) Having a strong, diverse DSC leadership team that can illustrate the positive outcomes at all levels, from individual to organization and community, will strengthen buy-in and build trust in the process
When considering stakeholders for a DSC project it is imperative to have diverse, cross sector leaders Remember to ensure that your leaders represent the population you serve whenever possible
Stakeholder Buy-In
Sectors to consider:
Consider Partners: • That can bring skills and experience to the group • That understand the needs of the community • Can offer resources and credibility to the work • That are financially stable • Who can make decisions within their organization
There are several components to building a robust group of stakeholders that we will address in this section:
• Developing New Partnerships • Involving Community Voice • Prioritizing Internal Champions • Creating Mutual Trust
Equity in Stakeholder Buy-in “Nothing about us without us ” This phrase captures in five words how essential engaging a diverse range of stakeholders is to building strong, trusting relationships in a data sharing collaboration Authentic engagement – inclusive of race, language, culture, socioeconomic status, and ability – is characterized by stakeholders possessing direct influence over the design and direction of a DSC Members of the community, especially those whose data is being collected and shared, must always be centered and empowered within the DSC to ensure an equitable approach Three questions will prompt identification of who needs to be front and center in throughout a data sharing collaboration: Why are we creating a DSC for our community? Who will this work benefit? Who can it potentially harm? Find out more in the Centering Racial Equity Toolkit
Developing New Partnerships To be effective, the collaboration needs a wide cross-sector of organizations that have agreed upon roles and uses for the shared data Building trust through the collaboration is the first strategic objective Each community is different and will have to work through its unique history, leadership, political, and other environmental factors Many communities have to address historic trust issues among organizations due to competing interests, funding priorities and valued data Each organization will also have to address their existing processes, assess their current data collection and usage, and build buy-in among their own staff as they are navigating the community-wide landscape Allowing each organization the time and respect to make the journey from skepticism and distrust to understanding and enthusiastic buy-in is critical
Each sector is a microcosm of communication, providing opportunity to build interest and share successes across organizations When beginning the expansion process, the DSC leadership should begin with organizations that are most interested and willing to join the collaborative and turn them into champions to assist in building interest and trust among other community partners
211 Provider
Human Services Providers
and similar centers
Plan representatives
Providing prospective partners with clearly outlined guidelines for joining the collaborative provides transparency and builds trust Many collaboratives, such as San Diego’s CIE and North Carolina’s NCCARE360, share documents such as inclusion policies, registration and onboarding requirements, workflow practices, and guidelines for security and privacy on their websites for interested organizations and community members to view
Involving Community Voice Involving patients, clients, and community members with lived experience in the development of any initiative that will affect their care is critical Gathering community input is a critical step and is often achieved through surveys and focus groups These are effective ways to find out what members of the community are thinking, but are just the first step towards involving community voice in your collaborative Additional ways to ensure ongoing engagement include:
Engaging an individual(s) trusted by marginalized groups to be a part of the Governance Structure. Asking partner organizations to invite groups of clients utilizing their services, or those who have “graduated” from their programs, to participate in an advisory committee that meets regularly (not necessarily frequently) to provide feedback and suggest improvements to proposed next steps
Inviting community members to an annual event to learn about progress, validate findings and data, and help plan for the future (see more in Reporting)
Prioritizing Internal Champions Entering into a DSC is an immense undertaking for organizations as they integrate the workflows of the collaboration with their existing processes From leadership to the staff working directly with clients, each level of an organization will go through a period of learning and adjustment At the community level, organizations will be learning to work with each other in new and more intricate ways Utilizing change management strategies can assist the community and organizations in making the transitions As each organizations’ team adjusts to these new ways of operating, they can become essential champions in helping others be successful in joining the DSC
Creating Mutual Trust Building trust among partners and across sectors is an essential process that takes time Each organization will approach the collaboration with its own unique set of concerns and challenges for joining, and may have new concerns arise even after being a member for some time Each issue should be addressed immediately and transparently to build trust and allow partners to feel they can openly express concerns without jeopardizing their place within the collaborative It will be important for the lead agency to remind the group that it is okay to share differences and that there will be times where it is necessary to compromise The leadership should also follow up with each member at different intervals to ensure they still feel a valued member of the team Some initiatives complete trust surveys to continue monitoring the trust being built within the team These are completed at different intervals based on the goals and progress of the group
STAKEHOLDER BUY-IN
Building blocks towards Trust and Mutual Respect: • Straight Talk: The first building block is the willingness to start
having open and direct communication • Listening for Understanding: Focus on intent, the meaning
behind what people are saying Hear, Understand, Interpret, and then Respond
• Communicate Commitments: Be clear about what you will do Agree on the What, By When, By Whom, and How steps Communicate your intentions and stick to them
• Accountability: Do what you say you will do without fail If circumstances have changed and it no longer makes sense to do what you said you would do, communicate back and explain why, and discuss and agree on the new steps Follow through over-and-over, be reliable, unfailing, dependable
• Professional relationships: All relationships including professional ones require work and regular maintenance Provide the opportunity to network and check- in with the group Allow everyone time at the end of meeting for an open agenda to offer support on other ways the group could support each other
• Trust: Trust results from the firm belief that another person can be relied upon Trust is the result of straight talk, making sure you understand and are understood, and keeping confidences as well as commitments
• Respect: Although there are many levels of respect, the respect that follows trust leads to deep esteem for another person We value their thoughts and input, and we know we can count on them because they have proven themselves out to us
Maintaining Partner Participation Partners will remain in the DSC as long as they see value in doing so Ongoing attention should be paid to all levels of the partners, from the CEO and board of directors to the front line staff A CEO or board of directors determines participation while frontline staff may stop entering information in the system if they do not see value Establishing a strong governance structure with regularly scheduled meetings allows for review of progress towards the strategic goals of the DSC Identifying interim milestones to be assessed and published within the DSC will help all who are involved see the progress that is being made, especially if they may not see it in their everyday work
Cultivate External/Community Champions During the planning phase, internal champions help new and potential partners understand the need for and benefits of an DSC in your community As you begin sharing the intent of and data from the DSC with the public, external champions can help community members see the benefit of having their individual information shared across organizations External champions may be individuals who have experienced improved services due to the DSC, are currently navigating the various systems and can describe their progress to date, or a person trusted by the community who can help individuals see the potential benefits of participating While data and statistics are beneficial in preparing grants or showing results, personal stories and trusted sources will increase the public’s trust and understanding of the DSC and its impact in their lives
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STAKEHOLDER BUY-IN Tips for United Ways Make It Easy: Address Barriers to Saying “Yes” Partners may want to participate in a data sharing initiative, but experience a variety of barriers - structural, legal, resource, and capacity - that prevent them from collaborating Partners want funding, time, ease of partnership, and other resources Figure out what their barriers are and address them before asking them to sign up, so they have no choice but to say “yes ” Be the problem solver and barrier remover for other organizations Make it easy for them to partner with United Way
Put the User at the Center: Put partner feedback front and center when designing the data platform and processes – show what’s in it for them Start small with a few, close partners who are willing to work through the initial kinks and challenges with United Way Help partners see what United Way is doing with their data, how the shared data reflects their work, and how it’s part of the larger work of the nonprofit community In other words, how the work that they do and that someone else does help the individual that comes to both of their programs Include partners in every win and set back, no matter the size, by sharing the data back to them in monthly meetings or lunch sessions
Build Capacity: If capacity is the barrier, help customize workflows for the organization beyond the basic “how to use’’ manual Use the onboarding process and technical training as ongoing opportunities to help partners’ staff learn how to integrate the data sharing process into their work every day Use donors, including Alexis de Tocqueville members, with special skill sets (such as lawyers) to help Consider offering workshops or learning sessions to bring partners together Provide partners a space to honestly share their barriers to participation or gaps in knowledge, so that the group can problem-solve and leverage strengths across organizations
As of August 2020, United Way of Northern Shenandoah Valley’s data sharing program, Connect NSV, has spread to 20 agencies and 49 licenses, and has made 1084 referrals to other partner agencies There have been 1500 unique service episodes, 45 percent of which are for housing and utilities Community-based organizations and agencies appreciate the program so much that they are now advocating for the benefits of Connect NSV for United Way: two existing partners helped onboard a larger partner without any assistance from United Way
STAKEHOLDER BUY-IN
• Change Management Resource
• Collaboration Spectrum Tool
• Best Practices for Convening a Community Advisory Board
• Data sharing and the law: Overcoming health care sector barriers to sharing data on social determinants
• From Program Performance to Collective Impact handout
• Guide to Evaluating Collective Impact
• Ready by 21’s Mapping Moving Trains
RESOURCES
STAKEHOLDER BUY-IN Tips for United Ways Governance Matters: The governance stage in hammering out a data sharing partnership agreement is critical as that is often when issues and mistrust surface, especially around revenues and costs That is why it is helpful to document your project’s core values and goals early on, embed them into your governance documents, and keep them front and center Refer to them when the hard questions arise This extra work upfront will pay off in client outcomes and revenue It is also important to be transparent about United Way’s own reasons for being involved; e g , how the project saves dollars because it offsets resource development work, and how it translates to free data for the participating organizations
Prioritize Relationship Building: Take the time it requires to develop relationships Understand that this could take a year or more Engage champions to socialize the solution Other partners can talk on behalf of the project to new partners, speaking to their successful experience and how it helps them with their own workflows Focus on strategic alliances and controlling what United Way can control For-profit partners such as platform vendors, as well as large donors, health departments, and health care leaders that have goals aligned with United Way’s can help facilitate collaboration and minimize turf wars Staying focused on true collaboration and getting the right people around the table can remove a lot of barriers United Way can use its relationships, skills and role as a convener to get everyone to “play nice” United Ways can engage non-funded partners as well by pivoting to what’s in it for them Participating gives them data access to other organizations and brings them into the United Way network, giving them an “inside angle” These kinds of engagements help build trust and allow United Way to paint a future of what could be and help them feel included in the vision
Be the Bridge-Builder: Help the healthcare sector recognize and use the expertise of nonprofit and social sector partners As the community’s “neutral facilitator”, United Way can elevate the expertise of human service organizations so that they are recognized and used by healthcare partners as experts in their field United Way is uniquely positioned to help people break outside of their traditional networks, shift perceptions, and understand the role that human service organizations play in healthcare Social service organizations such as food banks have conducted an extensive amount of research on food insecurity which helps hospitals interested in addressing social determinants By facilitating these connections – through a lot of time, meetings, lunches, etc , to build trust and common language – United Way can help healthcare partners improve access and promote the social determinants of health by looking at partners’ existing work, rather than reinventing the wheel Playing this role also adds to United Way’s credibility DSCs allows partners who have historically lacked the size or resources to engage in United Way funding mechanisms to elevate community voice and advance more equitable decision-making
STAKEHOLDER BUY-IN Tips for United Ways Credit Where Credit is Due: This is also the time to establish how the DSC will acknowledge the work of individual partners while ensuring the Collaboration is presented as a cohesive collaboration Make certain these guidelines for sharing information regarding participation and results are clearly documented
Be as inclusive in your collaboration as possible . People can be engaged across multiple aspects of the collaborative, and the more they feel included, the more likely they are to take up a platform Involve users in the build-out of whatever technology solution they’re going to use If they’re bought in, they’re much more likely to use it than if they’re offered it after the fact
The United Way of Pierce County, WA developed the behavioral health pod, a team of 12 behavioral, mental health, and substance abuse providers to identify needs and strategic responses They created a coordinated point of entry to manage behavioral health resources and referrals available to the public The success of the behavioral health pod stems from 211 and United Way’s ability to recognize trends and build an environment of long-time collaboration and cooperation between local human service organizations Calls regarding mental health decreased in March, and the BHP saw this as an opportunity to prepare resources and procedures for increased demand in behavioral health needs
STAKEHOLDER BUY-IN
Iowa communities documented in The Community Health Transformation Toolkit
Determining Financial Needs
The financial impacts and needs should be well researched and considered as much as
possible before making the initial monetary investment. There will be upfront costs and ongoing
costs to sustain a strong DSC in the community. United Ways have a vested interest in the
success of these initiatives and should think through the funding needs and strategy early on
seeking to develop a sustainable funding model.
Financial Planning
Aspects to consider include:
Methods of making financial contributions to the collaborative can be varied and include offering in-kind donations in the form of space for meetings, engaging business partners to provide technology or analytical expertise, staff time to assist in the creation of documents, marketing or printing support, grant writing, and more in addition to contributing funds The expected contributions and resulting benefits for each organization should be clearly stated in their initial agreements when joining the collaboration
TECHNOLOGY • Technology Purchase, usually a one-time purchase that includes initial setup of software for your community
• Technology modification costs, if allowed/needed
• Technology ongoing subscription costs (may be a flat rate or based on the number of users)
STAFFING • Staffing costs to monitor and assist with design, implementation and evaluation of DSC customer value,
including resources for navigation services
• Ongoing training costs for new users as turnover occurs at partner organizations
• Consider a train-the-trainer model as adopted by My Care Community to reduce the need to hold recurring training sessions each year
• Financial compensation (e g , stipends) for community members supporting the work Stipends or gift cards for compensating community members for their time; flexible funds to cover childcare, transportation, meals
FINANCIAL • Financial support for community resource information and database maintenance
• Financial support for workgroup members to create workflows and document processes
• Financial support for new partners to train staff on the system
FUNDING • Funding for expert data analysis and reporting
• Funding for creation and management of marketing materials, events, website content, etc
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Equity in Financial Planning Resource availability will help inform the scope and design of your DSC and who is engaged in it As you center community members in the effort, consider the following possible financial factors that could influence their full engagement and that need to be factored into the DSC budget:
• Will any participants receive compensation or a stipend? • Will participants need to be reimbursed for travel or other
expenses such as childcare? • Other incentives, such as providing free food and drinks at
meetings, or compensating participants for their time and knowledge
• You may also find that at times you will need to pay to augment or improve data that is missing critical elements necessary to address equity and the DSC’s success Budget for this upfront
Financial Tips for United Ways • Engage all partners in determining the initial financial needs
to ensure all ideas and concerns can be addressed • Host a brainstorming for partners to explore what resources they
can commit to the collaboration When initially asked, most people will think only of funding, encourage them to think outside the box
• To reduce or eliminate the costs of the platform, for both United Way and partners, write in or carve out a certain percentage from donations and larger grants for a data budget/innovation and technology
• Carve out some cash (e g , a $2000 “pizza fund” to cover small partner expenses) to address resource challenges and support buy-in
211 Connection in Financial Planning Across the 211 network, the roles that 211s commonly support in data sharing collaboratives include:
• Providing subscription or license to 211 resource data on a monthly or annual basis for a set fee
• One-time purchase of a static download of 211 resource data • Providing enhanced ‘navigation services’ to a
particular group of clients • Developing the platform to provide ‘closed loop
referrals’ for clients • 211 championing use of the platform amongst other
non-profit service providers to increase usage of the platform across a community
• Promotion of 211 for live assistance within a self-service platform
An essential step to financial planning for 211 teams is to determine what roles and responsibilities they will be serving and consider the operational needs to ensure these roles are properly resourced
Helping determine an appropriate cost model for 211 data is a common need The following is a tool that 211's can use to help estimate the cost per resource record, which can then be used in setting pricing levels for the sale of resource data to third parties The idea of creating a pricing tool has been around since 2-1-1 became a service, but recent demand for 2-1-1 resource data from healthbased software platforms focused on addressing the Social Determinants of Health has pushed our system into finding a quick solution To respond to this new consumer demand it is imperative that 211's create a business model for the sale of resource data that uses universal standard pricing
Standard pricing is not one price that fits all rather it needs to be based on the real costs of procuring and managing 2-1-1 resource data whether you're an independent 2-1-1 call center or a state system Establishing a cost per record will help eliminate any inconsistency or ambiguity between 211's and the businesses or organizations that are purchasing 2-1-1 resource data from different 2-1-1's across the country
FINANCIAL PLANNING
The governing materials of your data sharing collaborative are a guiding framework for the
work you do. Governance within DSCs is based on clear communication, shared values, and
foundational agreements that provide structure and rationale for collaborative decision-making.
Open communication with partners seeks input and strengthens confidence among the various
components of the initiative, mutually benefiting participants and the group as a whole.
Your DSC should begin thinking about the guidelines and agreements at the outset of your collaborative, to ensure that key stakeholders understand their roles and responsibilities, the nuances of data ownership and use, and the purpose and vision of the collaborative A strong governance structure helps answer questions like:
Governance
“How are decisions made
the data shared between partners?”
“What is the process for archiving or deleting data?”
Documenting your shared vision, values, and the formal guidelines of data sharing between partners will increase trust and confidence in your project, and ensure that participants are compliant with necessary legal considerations
Governance and Leadership Structure Thinking about how your DSC will structure the governance of the initiative is critical CIE San Diego has an excellent resource for establishing a shared governance structure In their toolkit, Collaboration and Cross-Sector Data Sharing to Create Healthier Communities, they detail the structure developed to support and sustain the collaborative for many years to come They include having multiple workgroups, establishing and documenting the core responsibilities of each group, as well as clearly defining the backbone organization Once these relationships have been built, people's voices have been heard, and leadership has been established, it is time to create shared values, goals, outcomes and a vision
Equity in Governance Engaging diverse stakeholders - starting with members of the community whose data is being collected and shared - to serve on governance committees is foundational to ensuring equity throughout all aspects of a DSC These stakeholders, which should also include partner organizations, bring all their lived experience and professional know how to the governance process They also bring practical knowledge based on their own relationships and connections To ensure the full potency of their participation:
• Build capacity for community participants and other partners to work together on agenda-setting, common language, defining values, and other governance tasks
• When designing ground rules and other rules of engagement, be aware of, and proactively address, the primacy of White Supremacy Culture on the DSC’s governance processes
• Include community stakeholders in defining which data should be collected or reused, and how
• Ask and consider why individuals “opt out” of providing data and use their feedback to minimize harm in data collection processes
Find out more in the Centering Racial Equity Toolkit
Shared Vision and Values Adopting a shared vision and set of values for the data collaboration will ensure all participants are working towards the same goals and adhering to agreed upon practices They also provide a point to return to in times of disagreement, providing a grounding statement to remind all parties of their shared intent and agreed upon methods of working together
Crafting a vision statement and set of values can be a challenging activity for any organization, and will be more so for a collaboration of multiple partners These statements must be broad enough to be accepted by every current and potential partner, yet specific enough to honor the work and intent of the collaboration
A vision statement is a big, bold idea that all of the partners agree to work towards To create your vision statement the collaborative will need to work through a series of steps to ensure everyone understands the purpose of the vision statement and help create it
Developing Your Vision Statement A vision statement is a short statement that lets others know what you are working to achieve long-term This is a time to think big!
ASK THE TEAM TO CONSIDER: What would be the ultimate result of our DSC being effective? For our organizations? For our clients? For our community?
Provide several examples of vision statements to energize the group A few examples are
• My Care Community helps Linn County residents attain and maintain wellness and optimal health by addressing social determinants of health (SDoH) to achieve person- centered goals
• Building Connections for a Healthier North Carolina creates a fundamental change in how North Carolina delivers on the promise of health
• Connect NSV is a coordinated referral network that seamlessly connects community members to services while allowing service providers to communicate in real time about their shared clients’ care and track outcomes together
ENCOURAGE short, bold statements that are easy to remember
Effective visions statements should have less than 20 words • Keep it simple, aim for a reading level at or below sixth grade • Aim high with words like “all” and “everyone” • Remember, this is a vision, not a goal!
Developing Your Values
There are two types of values that serve two very different purposes • Core values are those for which your group currently and always
will adhere These values are viewed as critical to your success and do not change over time
• Aspirational values are values that your group deem important and are working towards These may change over time as they are achieved or priorities change
When developing your values, ensure everyone is clear as to which type you are working on These definitions may be visited repeatedly and spark conversation and debate as some may believe the group has achieved a value while others do not and consider it to be an aspiration
As a group, • Brainstorm a list of core values • Review everyone’s lists and ask each person to define
their contributions: People may have varying definitions for the same term, such as integrity, transparency, and engaging community
• Together, narrow the list to 5-7 core values that everyone can agree upon This may take several rounds of elimination and conversation as people consider which are the most important for the DSC to adhere to
When developing your vision statement and values, consider utilizing an independent, non-biased facilitator as a proactive step to build participant confidence that voices will be heard and honored Vision and values also provide a critical filter and touchstone as the collaborative works through issues and decisions affecting the collaborative’s work in the future
Remind participants that the vision and values they are developing will be applied to the collaborative, their individual organization is not expected to adopt them as their own These statements apply to their work within the collaborative only, although there will likely be significant, but not complete, alignment with their own vision and values
We have them (values) because they define for us what we stand for, and we would hold them even if they became a competitive disadvantage in certain situations The same concept can be applied to data collection and analysis, values should be held to to protect the rights of individual clients, even if it means not being able to rerun a specific analysis.
Quote from “Building Your Company’s Vision” by James C. Collins and Jerry I. Porras
Legally Compliant Framework/Legal Considerations Establishing the practice of drafting and approving documented agreements and legal contracts at the beginning of a DSC provides clear understanding of each partners’ roles and capacity, ensures each organization acts within their respective protocols, and protects all participants rights in regards to data sharing There are several types of documents we will cover in this section:
Foundations Agreements for Data Sharing Collaboratives • Memorandum of Agreement or Understanding • Release of Information • Technology Contracts
Additionally, time should be spent researching federal, state, and even local statutes that protect individuals and organizations to ensure the DSC adheres to all legal rules Below we provide basic descriptions of four Federal statutes:
• Privacy Act of 1974 • Health Insurance Portability and Accountability Act (HIPAA) • 42 CFR Part 2 • Federal Education Rights and Privacy Act (FERPA)
Foundational Agreements for Data Sharing Collaboratives Leaders are important in establishing and maintaining collaboration However, leaders may change Documenting partnerships ensures continuity of the work when changes in leadership occur, and provides new leaders with clear guidance as to their role within the collaboration
Memorandum of Agreements/Understanding Memoranda of agreements (MOA) or memoranda of understandings (MOU) establish the roles, obligations, and limitations of each organization clearly, so collaboration and coordination efforts survive turnover in leaders throughout the years
Information sharing agreements that clearly delineate how data can and cannot be utilized should include unequivocal statements that client specific data may only be used in service to the respective clients, resulting in analysis of trends and outcomes being restricted to a macro or community level
Additionally, to preserve trust amongst partners, and allay fears of less than desired outcomes being used to degenerate or defund a program, agreements must restrict the use of organizational data to each respective organization This will be a critical section for United Ways, as current or potential funders within the collaboration, to ensure organizations will feel secure entering into the data sharing collaboration with United Way at the table
Release of Information A Release of Information (ROI) for clients should be developed and vetted at the State level to ensure all client data that will be shared among DSC partners is explained completely and clearly So that clients of all backgrounds can reasonably understand the ROI, it should be written at a basic reading level and translated to languages relevant to your community Special attention should be paid to cultural context when translating the document; utilizing professional translation services when possible and even consulting with community members from diverse backgrounds will increase accuracy and build trust with community members
Additional considerations for ROIs are: • Multiple methods of completing the form, email, hardcopy, in-
person with assistance, etc • Understanding of right of refusal Clients must understand and
feel comfortable exercising their rights of refusal • Ability to rescind permission at any given time • Need to obtain a signed ROI from a minor who has turned 18
(transfer of permission from parent to newly aged adult)
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Technology Contract A separate and specific contract will be created between the backbone organization and the technology company This contract will outline many important technology related details and, for legal purposes, should clearly state who owns the data captured within the platform This statement should allow the community (ie, the backbone organization or the organization managing the data platform) to retain ownership of all information if a decision to transition to a different provider is made in the future
Federal Compliance When entering a Data Sharing Collaborative, there are several levels of confidentiality and legal compliance the partners must protect: Clients’ rights, individual organization’s policies, and state and federal statutes Four federal statutes and regulations are most relevant to data sharing and integration and should be reviewed and discussed to ensure all organizations in the DSC have a clear understanding of each and how it relates to their respective organizations:
• Privacy Act of 1974 : Addresses the disclosure of records and an individual’s right to access and request changes to records pertaining to themselves
• Health Insurance Portability and Accountability Act (HIPAA): Addresses the disclosure of patients information without their consent to non-covered entities, i e non medical personnel or personnel not engaged in their care
• 42 CFR Part 2 : Provides protection for clients receiving treatment for substance abuse disorders
• Federal Education Rights and Privacy Act (FERPA) : Protects the rights and security of children in public school districts
Time should also be spent researching your State’s legal requirements for
• Sharing an individual’s data • Requirements regarding contents of Release of Information
documents and how often these must be revisited, some states require clients resign an ROI on a regular basis
• Rules regarding the number of individuals that must be represented in a data set
It is also important to note that these standards may vary based on the type of data being shared, such as medical, educational, financial records etc
GOVERNANCE Tips for United Ways A first step in developing the vision and value statement is to determine if the group is operating in a consensus or unanimous setting While unanimous would be ideal, consensus is generally the most realistic and productive mindset
Review the FERPA Act before engaging school districts in data sharing conversations to ensure you fully understand what information is protected by the Act and what schools are allowed to share With this understanding, you will be able to respectfully approach the topic with school personnel and work together to establish data sharing practices to better serve the children of your community
Establish a specified timeframe for reviewing all contracts, such as an annual renewal period for all partners with prorated costs the first year, or renewal based on anniversary date to create a clear understanding of expectations and opportunities for modifications See more in the Sustainability section
Being aware of all legal statutes will help United Ways understand what information they can access and utilize, ensuring no information that is provided to them in error by another organization is shared publicly
The trend in data-related laws is toward stricter data privacy and stronger consumer protection California recently passed a data privacy law that rivals General Data Protection Regulation (GDPR), a law that protects the data of European subjects and is regarded as one of the most strict data privacy laws in the world To build a DSC that is ready for the future, and to ensure you’re doing everything in your power to protect your community members, it is best to design your policies and practices as if your state has already adopted strict data privacy laws Otherwise, you may find your collaborative scrambling to adjust to new legislation in the future
Governance is not a one size fits all, it can change over time and will vary from one community to another so be flexible and listen to partners
• Policies in Practice
• NNIP’s Catalog of sample of agreements, MOA/MOUs, etc.
• Less is More: The Role of Small Data for Governance in the 21st Century
• UW Rochester’s RFI/RFP for their data ecosystem?
RESOURCES
211 Connection in Governance 211 brings a broad and deep perspective to governing data sharing collaborations Since a 211 is not limited to just one category of referrals or services, 211 reaches all health and human service activities and can engage a broad spectrum of providers in governance 211 should enlist their informal and formal collaborations with all categories of service providers listed in their resource directories to harness expertise and leadership across their community The expansive reach of a 211 referral network can prove to be a valuable asset in creating inclusive and substantive governance structures
Just like an orchestra of diverse musicians creates a robust symphony of music, 211 can engage diverse service providers from coalitions and their referral network to bring a variety of skills and perspectives to governance teams
Data infrastructure is a nebulous concept One easy way to make sense of data infrastructure is to think of it the same way we think of physical infrastructure like roads, municipal water pipes, and powerlines Data infrastructure is the collection of assets used in the capture, use, promotion, and sharing of data This can include tangible assets like data physical servers, cloud-based servers, software used by the DSC, and datasets It also includes intangibles like interoperable data standards, data policies, and other rules of the road likely fleshed out in the DSC’s governance documents
Data is used in, and created by, everyday operations from serving a client, to tracking progress
and cost per encounter. Data support managerial and professional work are critical to almost all
strategic decisions, at all levels of an initiative and organization. Through data, managers learn
about an organization’s human and financial resources. Data can be analyzed in almost unlimited
ways in the search for new opportunities, service gaps, process improvements, and cost savings.
Setting up an information technology infrastructure can be very complex in collaborative initiatives due to each organization utilizing different data and having different needs for the data As a rule, the more comprehensive the data DSC partners gather, the more difficult it will be to set up the final infrastructure to ensure it meets the needs of all of the partners of the DSC This process will be time consuming but should not be rushed or overlooked -- missing data necessary for an organization’s ability to properly serve their clients may result in them withdrawing from the DSC rather than record data in multiple systems
Data, Technology Platforms and Infrastructure
Selecting a Technology Platform requires consideration of several factors including cost (both initial and ongoing), flexibility to customize, familiarity with Data Sharing Collaborations, ability to automate the initial upload of data from partners and availability of ongoing support, and how it addresses equity It is recommended to receive demonstrations of several options to familiarize the group with the different capabilities available Do not refuse a demo due to an initial cost estimate, you may learn of a feature you had not considered or find efficiencies embedded in this platform that may save your community partners money
Many DSCs spend more time designing technology infrastructure or deciding on a particular platform than they do on developing the foundational goals and governance within their partnership. While staff and organizations will frequently interact with the data system you select or create, and technology frustrations can be detrimental to the success of a DSC, the field of data sharing technology is rapidly innovating. A trusted partnership between organizations with shared goals (who maintain ownership of their local data) can weather changes in technology.
In addition to identifying data necessary for the partner organizations to best serve their clients, the DSC must gather data needed to analyze the needs of the community and identify trends of success for potential replication And of course, the DSC must consider the ability to be flexible in addressing the needs of future partners as they come on board
Equity in Data Technology Platforms and Infrastructure To ensure equity in the data collection process, it is essential that every client of a DSC’s participating partners is informed of what happens with their data and is given the option to participate or not Additionally, it is critical to consider the following components of the data collection process:
DATA COLLECTION
Data is created, designed, collected, and interpreted by humans, and thus is vulnerable to all the biases (e g , implicit, selection, confirmation, etc ) and mistakes inherent to being human Technology is no more immune to the effects of human bias since humans design that technology Data can also be incomplete or contain gaps Finally, data collection is not necessarily random and can include communities that are over-surveilled by formal entities An equity lens examines and considers how to reduce and contextualize the vulnerabilities of a data collection process
DATA ACCESS
Who has access to data is a significant consideration for equity From the very start, a DSC must consider and plan for the practical and legal issues around data availability and decide which data is open, restricted, or unavailable It’s time consuming work but the risks and benefits must be thoroughly examined to ensure that all equity concerns related to who has access to what data are addressed up front Consider permissions and accessibility as you create the governance structure of your DSC
ALGORITHMS/STATISTICAL TOOLS
Algorithms incorporate statistical tests and logic to analyze data, predict results, and automate decision-making Algorithms reflect the biases of those who create them and of the data used Fortunately, there are approaches that should be used to ensure transparency, assess bias, and determine the potential consequences of applying an algorithm in practice The five guidelines from Fairness, Accountability, and Transparency in Machine Learning are a useful starting place to inform the development and use of algorithmic tools in ways that ensure accountability and minimize concerns about equity
Again, this is where meaningfully and legitimately involving the people whose data is being collected can serve a critical ethical and analytical purpose to ensure that equity is centered on the impact of a data collection process
Find out more in the Centering Racial Equity Throughout Data Integration Toolkit
Analysis
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Data Infrastructure Data infrastructure is a nebulous concept. One easy way to make sense of data infrastructure is to think of it the same way we think of physical infrastructure like roads, municipal water pipes, and powerlines. Data infrastructure is the collection of assets used in the capture, use, promotion, and sharing of data. This can include tangible assets like data physical servers, cloud-based servers, software used by the DSC, and datasets. It also includes intangibles like interoperable data standards, data policies, and other rules of the road likely fleshed out in the DSC’s governance documents.
Each DSC will need to make decisions about what components of their data infrastructure they want to build or buy. Decisions about servers, data lakes, and databases are complex and affect everything from cost to data security You will need to work with your IT department and partners in the DSC to determine the best fit for your purposes and situation A helpful way to engage your IT leaders is to provide them with examples of DSCs in other communities
A critical part of modern data infrastructure are Application Program Interfaces or APIs. APIs are a common method of linking data between systems that eliminates the need for manual duplicative data entry Run at predetermined intervals or synced in real time, APIs share information between two or more systems in a secure and efficient manner Returning to the physical infrastructure analogy, if datasets are water, APIs are indoor plumbing making it possible for municipal water to flow from your kitchen sink (and for the water down the drain to be returned to the sewer) The trick with APIs is that both data systems have to agree to allow the bi-directional flow of the data and that is not always the case This can be a barrier for some organizations Many organizations, particularly smaller organizations with less mature IT organizations, won’t be able to leverage APIs It is important to provide those organizations with technical support to help them take advantage of automated data integration If an API is not possible for their system, there should be an opportunity for the organization to securely upload their data (for example as an Excel file or CSV) on a regular basis to allow them to contribute to the DSC Not providing support or allowing for alternative data ingestion methods can create inequitable barriers to participation Flexibility and a desire to make systems work for diverse organization needs is key
DATA, TECHNOLOGY PLATFORMS AND INFRASTRUCTURE
Coordinated Care Platforms Health care providers and payers have broadened their understanding of the impact social and environmental factors have on individuals’ health and wellbeing in recent years The ACA began a shift towards “value-based care” as a way to incentivize providers and payers to prioritize health outcomes rather than healthcare transactions by shifting funding and compensation towards health indicators and away from fee-for-service models As a result, providers and payers are now focusing on strategies they can deploy and influence that will result in the best health outcomes at the lowest possible cost
To measure ROI and ultimately seek reimbursement based on these referrals, it became critical that health care actors be able to track a referral through to ‘completion’ and, ideally, associate positive health outcomes with specific services and activities With this shift, a new market was created for scalable solutions to connect patients with social services providers to address non-medical needs that impact health outcomes Dozens of technology companies developed new platforms and tools to enable physicians, insurance companies, and others in the health sector to ‘prescribe’ a social service as they would a medication and enable the prescriber to “close the loop”– i e prove that a service was received by the patient
Multiple Coordinated Care platforms exist and are currently used in DSCs Each platform has its own unique user experience and functionality As a group it will be important to look at the different options and decide which one works best for your group’s overall needs For a helpful breakdown please click here and view pages 16-18 of the Siren Network’s crosswalk of platforms .
Several of these companies are working with 211s and United Ways to develop networks of care providers, purchase access to community resource data, and provide ‘navigation services’ to clients
Features to consider when selecting a platform that affect cost to consider and weigh the importance of include:
• What is the initial set up costs and what is included (how many users, customization of fields, training and ongoing support)? Is the cost based on the number of users? If so, is sharing logins acceptable to the DSC as a way to reduce costs if needed?
• Is the renewal rate a flat fee, user based, or a combination of both?
• Can fields be modified by DSC administrators, or will a request need to be made to the platform provider?
• Is there a limit to the number of data fields per client record? If so, what would be the cost to add more?
• What is the cost to export all of the data if you choose to move to a different platform in the future?
• What are the costs to set up automated data transfers such as an API?
Functionality of the system must also be reviewed such as • Ability to create user levels with assigned access to data? • Reporting features, does the platform need to create graphs? • What type of export options exist? Ensure data can be exported
in both static graphs for presentations or in a table that can be manipulated for analysis
• Capturing longitudinal data for individual client records that can be accessed by care team members
• Alerting care team members of significant changes to a client’s record such as an updated SDoH screening, receiving a new service, or completion of a program administered by another organization
• Presence of a change log to capture the date, time, and user ID when action is taken on a client record
These features may not be relevant during the initial implementation, but knowing if they are available should aid in choosing a platform that provides a robust capacity for extensive reporting and analysis
Data Security, Roles, and Permissions Building in user levels to be assigned by system administrators into the data system provides assistance in ensuring data is used correctly Many coordinated care systems automatically create access rules to individual level data Only members of an individual’s care team (nonprofits they have interacted with) are able to see the record Some information regarding sensitive issue areas (eg domestic violence or substance addiction) may not show up to users even if they have permission to view the individual’s record Additionally, a data analyst would have access for aggregated reporting capabilities, but restricted access to individual data For DSCs creating custom infrastructure solutions, these roles and privacy concerns must be taken into consideration
For example: When a service provider completes a SDoH screening for an individual other providers serving the individual will have visibility to the results However, a data analyst will have access to the aggregated results of ALL SDoH screenings completed in the system to create community level reports for analysis of service gaps, neighborhoods in need, etc , but will not be able to access any one individual’s screening results
Resource Data and 211 National Platform A local 211 database is an important asset to a DSC as a source of vetted services available within their community A comprehensive and maintained 211 Database can relieve the DSC from a long, tedious research stage of identifying organizations, programs, and services along with the qualification regulations for each Resource data can also be monetized to support coordinated care efforts, creating useful revenue for United Ways and 211s (see Determining Financial Needs)
The 211 National Data Platform (Platform) is a single, authoritative, trusted source of community social and human service data The Platform aggregates data from local 211 resource management systems into a shared national database Data is made available to authorized users and paid subscribers through applications such as websites and programming interfaces (e g APIs) The primary goal of the Platform is to aggregate and help the network leverage community resource and services data that 211s invest in maintaining and use to make high quality referrals The Platform is built with capabilities to also aggregate and help the network leverage needs data, or call record data
211 can also serve as an entry point for community members to access services within the DSC

DATA SHARING COLLABORATIVES

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