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
76
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
DATA SHARING COLLABORATIVES The Importance of Sharing Data
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
DATA SHARING COLLABORATIVES The Importance of Sharing Data
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?”
DATA SHARING COLLABORATIVES The Importance of Sharing 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
DATA SHARING COLLABORATIVES The Importance of Sharing Data
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
DATA SHARING COLLABORATIVES The Importance of Sharing Data
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
DATA SHARING COLLABORATIVES The Importance of Sharing Data
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
DATA SHARING COLLABORATIVES The Importance of Sharing Data
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