WWW.FAMILIESUSA.ORG
Enrollment
Collecting Consumers’ Health Care Stories:
What Enrollment Assistance Organizations Need to Know
ISSUE
BRIEF
/ FEBRUARY
2016
COLLECTING
CONSUMERS’
HEALTH
CARE STORIES: WHAT
ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
1
Organizations that provide application
assistance are well-positioned to help
elevate the stories of consumers who
have explored their coverage options
under the Affordable Care Act.
regarding the collection and storage of personally
identifiable information (PII), assister organizations
must take additional precautions if they want
to follow up with a consumer who has used
enrollment assistance on any issue that is not
directly related to the consumer’s application, such
as a story sharing opportunity.
However, these organizations must take precautions
if they want assisters to follow up with consumers
on any issue that is not directly related to their
application, such as a story sharing opportunity.
Fortunately, CMS issued resources in November
2014 and February 2015 that clarify how
assisters (including navigators, non-navigator
assistance personnel [in-person assisters],
certified application counselors [CACs]) and their
organizations can collect information for follow-up
or additional outreach.
Consumers’ personal health care stories can span
a wide range of topics as varied as an individual’s
experience enrolling in coverage for the first time,
how in-person assistance helped a consumer select
a plan, or how a family benefited from a special
enrollment period (SEP). These stories can be useful in
an organization’s in-reach, outreach, public education,
or media efforts. (For more ideas on how you can
share stories publicly, see p. 5.) But before any assister
organization helps tell the stories of people who have
used enrollment assistance, it must think through how
it can incorporate story collection into its work.
There are many methods organizations can use to
collect stories, including making use of enrollment
assisters. However, due to privacy regulations
ISSUE BRIEF / FEBRUARY 2016
Organizations that want to begin collecting stories
as part of their work need to understand:
»» The basics of story collection
»» Ethical story collection and sharing
»» How story collection and enrollment intersect
Personal stories
are one of the most
powerful tools for
raising awareness
and educating the
public. One person’s
experience can
illustrate a program’s
success, demonstrate
the need for reform,
and motivate people
to take action in a way
that facts, figures,
or expert testimony
cannot.
»» The two different types of consent for
enrollment assistance and story collection
»» How to introduce the topic of collecting stories
WWW.FAMILIESUSA.ORG
The Basics of Story Collection
Building a story bank is a three-step process:
Whether an organization has a long history
of featuring personal stories or is new to the
practice, it is important for the organization to
think through its story bank program. Collecting
and highlighting stories—much like providing
enrollment assistance—requires thoughtful
planning and an emphasis on maintaining privacy
and empowering individuals.
1 Identifying people who are willing to share their
stories
Organizations must also be both ethical and
responsible when it comes to collecting and
disseminating stories.
Creating a Story Bank
Many organizations that choose to collect stories
house them in a centralized location called a story
bank. Often, organizations will use a database or
spreadsheet system to store contact information
and notes on storytellers (anyone who has agreed
to share his or her story), rather than relying on
individual staff members to keep track of stories. A
centralized, easily accessible story bank can come
in handy when a member of the media expresses
an interest in talking to a “real person,” or when
the organization wants to incorporate stories into
its activities.
2 Developing stories (getting a full picture and
verifying details)
3 Disseminating stories publicly
Below, we provide a brief overview of these three
steps. An organization may choose to handle all
three steps itself, or it may choose to partner with a
third-party organization to accomplish some of that
work. For more comprehensive information about
how to create a story bank program, see our Story
Bank Toolkit (http://familiesusa.org/story-banktoolkit) and our brief, How to Create a Successful
Story Banking Program (http://familiesusa.org/sites/
default/files/product_documents/storybank_brief_
final_web_0.pdf).
Organizations need to remember that, before they
share stories publicly or connect consumers to story
sharing opportunities, they should dedicate time to
vetting and fact-checking stories. This process, while
sometimes time-consuming, ensures that stories
that are publicly disseminated are true and accurate,
which can save organizations and storytellers from
potential embarrassment.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
3
1 Identifying People Who Are Willing
to Share Their Stories
One of the easiest ways for organizations to create a
story bank is to begin by identifying people who are
willing to share their stories. If an organization wants to
collect stories on a specific topic, it should “go to where
the people are.”
If an assister organization wants to create a story bank
focused on assistance or enrollment, it should figure out
how to integrate story collection into places when and
where the organization interacts with consumers who
are applying for coverage.
Collecting stories can happen in two ways:
»» Through digital collection methods: for example, a
web form, an email campaign, or social media
»» At in-person activities: for example, during face-toface interactions like an appointment, a meeting, a
conversation at an event, or a phone call
Any information that is collected or submitted, including
contact information and a brief description of the story
(called a “story lead” or “lead”), can then serve as the
basis for follow-up interactions.
2 Developing Stories
Before sharing a story publicly, an organization must
“develop” the story. That means gathering a complete
picture of the circumstances of the experience the
storyteller is sharing with your organization. This is
done by conducting a more in-depth interview to
flesh out elements of the story, verify information, and
check details in the story against publicly available
information.
For stories that involve eligibility for particular benefits
or programs, it is especially important to clarify which
program an individual is eligible for, the specifics of
that person’s benefits, and whether he or she has
experienced any trouble post-application.
Any information
that is collected or
submitted, including
contact information
and a brief description
of the story, can then
serve as the basis for
follow-up interactions.
Storytellers, especially those with low health insurance
literacy, may unknowingly misrepresent parts of
their story. For example, they may claim that they are
“ineligible for Obamacare,” when in fact they fall into
the Medicaid coverage gap. Alternatively, they may
make a statement that their “Aetna insurance is free,”
when in fact they are covered by Medicaid and receive
care through a managed care organization. While
neither of these claims is factually inaccurate, they do
not accurately describe the situation the storyteller is
experiencing.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
4
Developing a story allows an organization to ensure
that any story it shares is accurate and based on
facts. An interview can also tease out details of an
individual’s experience and help bring clarity to
the story before any storytelling opportunity. To
allow enrollment assisters to focus on their primary
responsibility of providing enrollment assistance, it
can be more efficient to rely on other dedicated staff
members to develop and vet stories.
3 Disseminating Stories Publicly
As soon as an organization starts to develop stories, it
can begin incorporating the voices of storytellers in its
work. There are countless ways that personal stories can
strengthen an organization’s activities, from their public
communications to their outreach efforts.
The following is a partial list of how organizations that
perform enrollment assistance can highlight stories:
»» Working with the media
»» Creating testimonials or short videos describing the
importance of enrollment assistance
»» Incorporating stories into public education and
outreach materials
»» Asking storytellers to share their stories at inperson events, such as town hall meetings or
outreach events
Organizations should think creatively about how they
want to engage in storytelling throughout their in-reach
(which involves current clients, patients, or supporters),
outreach (which involves new clients, patients, or
supporters), and public education efforts.
Whether storytellers publicly share their stories
themselves or an organization shares their stories on
their behalf, organizations should talk to storytellers
before each story sharing opportunity, and storytellers
should know how, when, and where their stories will
be highlighted.
Ethical Story Collecting and Sharing
If an organization chooses to engage in story collection
and story sharing, it must take every precaution to ensure
that it engages in these activities ethically. This means
ensuring that stories are factually accurate and based
on true accounts, and that storytellers are active, willing
participants in the public dissemination of their stories.
It can be tempting to share stories from which identifying
characteristics have been removed (such as a storyteller’s
name) or through creating composites. However, to
engage in ethical storytelling, it is necessary to stay
grounded in accurate, verifiable stories about real people.
Furthermore, storytellers should always remain the
owners of their stories. They must always give their
permission before their story, likeness, or contact
information is shared, even if they have already shared
their experience with an organization.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
5
Organizations must develop protocols to support
storytellers from the point of collection all the way
through public storytelling opportunities and beyond.
Publicly sharing a story can be a daunting prospect for
some storytellers.
It’s important for organizations to show storytellers that
they are not alone in any story sharing opportunity, and
to make sure that they are comfortable throughout the
process. Organizations can do this by:
»» Working with storytellers before any storytelling
opportunity to provide guidance and tips
»» Always securing consent before sharing their
stories
»» Being upfront about where, when, and how the
organization will disseminate their stories
How Story Collection and
Enrollment Assistance Intersect
Organizations that provide enrollment assistance
and want to collect consumers’ stories may do so
through a variety of tactics. One easy way is to involve
enrollment assisters in asking consumers to share their
stories, since assisters have ready access to potential
storytellers and already engage them in conversation.
Enrollment assistance organizations can collect stories
as long as they follow specific guidelines developed by
the Centers for Medicare and Medicaid Services (CMS)
that are designed to separate the process of enrollment
assistance from the process of story collection. Given
those guidelines, it is helpful to know the limitations of
what an assister organization can and cannot collect,
and when. Assister organizations must take a few
additional steps regarding consumer consent before
they can collect stories.
Assisters who engage in story collection must follow a
two-step consent process. Assisters must:
1. Receive consent to access the consumer’s
personally identifiable information for the purpose
of application assistance
It’s important for
organizations to
show storytellers that
they are not alone
in any story sharing
opportunity, and
to make sure that
they are comfortable
throughout the
process.
2. Request consent to collect the storyteller’s contact
information and basic story for the purpose of
follow-up, outreach, and story sharing
In this discussion, we refer to applicants as “consumers”
during the application process. When they agree to
share their story, they become “storytellers.” Though
they are the same individuals, this differentiation may
help organizations conceptualize how to store people’s
information and how the different levels of consent will
work in practice.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
6
What Is PII?
All organizations that deal with assisters in their story
collection efforts must follow any rules regarding
personally identifiable information (PII). CMS defines
PII as “information that can be used to distinguish or
trace an individual’s identity, such as their name, social
security number, biometric records, etc. alone, or when
combined with other personal or identifying information
that is linked or to linkable to a specific individual...”
During the process of application assistance, assisters
may encounter many forms of PII, such as a consumer’s
name, birth date, Social Security number, and
household income.1 That’s because the marketplaces
need consumers’ PII to determine their eligibility for
health coverage.
The Two Different Types of Consent
for Enrollment Assistance
and Story Collection
As mentioned above, assisters who engage in story
collection must follow a two-step consent process.
Below, we provide more detailed descriptions of those
separate consent processes.
Obtaining Consent for the Purposes of
Application and Enrollment Assistance
Before helping consumers with application or enrollment,
assisters must first discuss with consumers what the role
of assisters is and how the assister organization plans
A Note about Storing Consumers’ and Storytellers’ Information
If an organization is subject to additional requirements regarding the
storage of personally identifiable information (PII), protected health
information (PHI), or the Health Insurance Portability and Accountability
Act of 1996 (HIPAA), it may need to take additional steps throughout
the story collection and sharing process. These steps may include but
are not limited to the storage of stories, tracking different types of
storytellers in databases (consumers vs. patients vs. storytellers), and
where stories can be collected.
to protect and use consumers’ PII. After this discussion,
assisters must receive consent from consumers to get
access to and use their information to provide assistance.
Assisters can obtain consumers’ authorization orally (for
example, over the phone), in writing, or both.
CMS has developed a sample consent form that
navigators and CACs can use to obtain consumer consent
in writing. Alternatively, organizations can use their own
authorization form as long as it conforms to the CMS
guidelines.2
Assisters are required to retain and secure a record of
each consumer’s authorization for at least six years. A
consumer can revoke or limit that authorization at any
time. These measures are required for all assisters and
are within the scope of assisters’ duties.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
7
Obtaining Consent for the Purposes
of Story Collection
If assisters want to ask consumers to share their stories
publicly, a second type of consent is needed from those
consumers before assisters can collect their information
and engage in storytelling activities. Assisters already
have to receive consent to help people apply for health
insurance, but they have to get an additional type of
consent for follow-up, including sharing a person’s story
with an organization or a partner organization.
Assisters who are interested in asking consumers to share
their stories publicly can do so in several ways. Assisters
can collect the stories themselves, or they can encourage
storytellers to submit their stories on their own.
The following are three basic methods for encouraging
consumers to submit stories. The best method will
depend on each organization’s unique situation.
1. The assister can direct storytellers to an online
collection form or website to submit their stories.
2. The assister can give storytellers a paper
submission form and ask them to submit the
stories to a secure location themselves.
3. The assister can either fill out a submission form
or ask storytellers to complete the form, and the
assister can collect the forms. Note that many
assisters collect only brief information for follow-up
purposes instead of collecting and developing the
full story at that time. This helps assisters use their
time efficiently.
In the first two methods, the assister needs only to refer
the storyteller to a collection tool. The assister may ask
the storyteller to submit a story, but the assister does
not need to worry about collecting a consent form or
additional paperwork himself.
In the third method, however, the assister must
collect a separate consent form that will cover storing
and accessing personally identifiable information
for additional outreach and follow-up, including any
storytelling activities.
This second, separate level of consent is needed for
follow-up, including story collection, because these
activities fall outside the assister’s role, and they are
distinct from the regular duties of an assister. CMS offers
the following guidance:
If assisters are
interested in asking
consumers to share
their stories publicly,
they need a certain
type of consent from
those consumers
before they can collect
their information and
engage in storytelling
activities.
“We recommend as a best practice that assisters
use a document separate from any record of the
authorization requirement related to FFM [federally
facilitated marketplace] or SPM [state partnership
marketplace] assister duties to obtain a consumer’s
consent if either: 1) the purpose is outside the
scope of your assister work; or 2) is not related to a
state reporting requirement related to your role as
assisters. This separate consent will make it easier
for consumers to understand the scope of FFM/
SPM assister duties and how their PII will be used in
the context of the organization’s FFM/SPM assisterrelated services.”3
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
8
Overview of the Process for Obtaining Consent
4
This diagram shows how a conversation might flow
Explain to consumer the
roles and responsibilities
of an assister
1
Help consumer begin
application and walk through
the process with the consumer
2
3
Receive authorization to provide application assistance and
to use PII for the purposes of application and enrollment
assistance (1st level of consent, use CMS [or modified] form]
Collecting PII for story banking should be done in
a process that is separate from collecting PII for
application and enrollment assistance.
Story collection most often comes at the end of a
consumer’s appointment, or once the consumer
has finished the enrollment process. Placing story
collection at the end of the conversation serves another
purpose: By the time an application is complete,
Store consumer consent
forms in a safe
and secure place
Ask consumer if he
or she would be willing to
share his or her story
4
Help consumer
complete enrollment
5
6
7
Receive authorization to collect story (2nd level of
consent, use the organization’s consent form or other
collection tools where the storyteller can provide consent)
assisters will have a good sense of the individuals
they have helped. They will know information about
the programs those individuals qualified for, as
well as their previous insurance coverage, family
composition, and employment status—all pieces
of information that are important to record in leads
(contact information and a brief description of the
story, also called “story leads”).
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
9
Example of Receiving Consent for Both Enrollment
Assistance and Story Collection
In a conversation where an assister is helping a
consumer with the enrollment process, how does the
assister ask someone if they would be willing to share
their story for the purpose of story banking? Let’s look at
an example:
Before Angela leaves, Jay shifts the conversation. He
explains to Angela that his organization is interested
in highlighting the stories of people who received
help filling out their application. This might include
talking to the media, sharing a personal experience
in promotional materials, or speaking at an event
Jay’s organization is hosting.
Jay is an assister who is scheduled to meet with
his client, Angela. When they sit down to begin the
application, Jay explains his role as an assister and the
process for completing the application. Jay explains that
he will be using Angela’s PII to assist in the application
process. He then gets written authorization from Angela
and explains that she can revoke this authorization at
any time. After Angela signs the authorization form, the
two begin filling out the application.
Jay asks Angela if she would be willing to talk with
someone at his organization in the future. She
agrees, and Jay asks her to fill out a second consent
form to pass along to his organization. After she
fills out the second form, Jay jots down a few notes
(also called a story lead) to pass along to the
organization’s story bank coordinator (an individual
who compiles and organizes an organization’s story
bank).
During the process of filling out the application, Angela
and Jay get to know one another a little bit. They have
some down time while waiting for components of the
application to go through. Jay learns that Angela is a
substitute teacher at a local elementary school and has
twin teenagers who are enrolled in the Children’s Health
Insurance Program (CHIP).
Jay submits the following:
Angela learns that she is eligible for a plan with
financial assistance, and Jay explains what this
means for her coverage going forward. After selecting
a plan, Angela thanks Jay for his help and says that
she is relieved to have health insurance for the first
time in years.
>> Angela Myers, 43, [email protected], 123-4569876
>> Story collected by Jay Hernandez at Oakland County
Health and Enrollment Fair, 1/5/2014
>> Angela is a substitute teacher in Oakland County. She
enrolled in a plan with a tax credit. She is a single
mom, and her two kids are on CHIP. She is “relieved to
have insurance for the first time in years.”
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
10
In this example, there is a clear delineation between
the application assistance process and the process of
story sharing, noting how they are completely separate
processes. We can see that Jay is an enrollment
assister whose primary job is helping people get
health coverage, but that in a separate portion of the
conversation, he asks Angela if he can record her story
for outreach purposes. Jay has crafted the lead to show
where he met Angela, how to get in touch with her, and
a basic overview of her situation.
An organization may choose to request that assisters
ask everyone they help to share their story. Alternatively,
they may have assisters ask only certain people who
meet the criteria they are looking for. In the above case,
Angela indicated that she had a positive experience, and
Jay found Angela’s story to be particularly compelling.
Assisters who engage in story collection should make sure
that consumers do not feel coerced, pressured, or like they
will be treated differently for choosing to share their story.
How to Introduce the Topic of
Collecting Stories: Five Example
Story Collection Scenarios
Let’s look at five common scenarios to see how and
where assisters can integrate collecting people’s stories
into their organization’s work and what is required in
each scenario.
SCENARIO 1
A Story Is Collected at an Enrollment Event,
Not during Application Assistance
The scenario: At an enrollment event, the sponsoring
organization has a station for consumers to share their
stories after they have completed their appointment.
The station has several tools for collecting stories,
including written forms and a box for submissions. A
staffer is at the station encouraging people to share
their stories.
The authorization needed to move forward: In this
case, the first type of consent form is not needed,
since the consumer should have already signed it
during the application and enrollment process (which
is totally separate from the process of collecting
stories).
Assisters who
engage in story
collection should
make sure that
consumers do
not feel coerced,
pressured, or like
they will be treated
differently for
choosing to share
their story.
The only authorization form needed here can be
included in the organization’s regular tools for
collecting stories—whether it’s a postcard or a onepage form. However, the form should indicate that by
submitting his story, the individual is willing to have
someone contact him about sharing his story. This
principle applies whether the organization collecting
the story is the same organization that helped him
with his application or if it is a third party.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
11
SCENARIO 2
An Assister Helps a Consumer Enroll
and Collects His Story
The scenario: A consumer contacts an organization
requesting help with filling out an application to enroll in
health coverage.
The authorization needed to move forward: If the
assister is going to help this person with enrollment
and ask to record his story, the assister will need him to
consent to both processes. Much like the example with
Angela and Jay, any time an assister collects a story, it
should be a separate process from helping someone
enroll.
SCENARIO 3
An Assister Needs to Make Sure the Consumer
Did Not Limit His or Her Consent Initially
The scenario: An organization’s assister collects a story
at an event. A different individual, the “interviewer,” calls
the storyteller to develop his story through an interview. In
the course of the conversation, the interviewer determines
that there was an issue that prevented the storyteller
from enrolling successfully and he might need more help
completing the enrollment process.
The authorization needed to move forward: Since an
enrollment assister affiliated with the organization provided
the initial application help, there should already be a
consent form on file, and the interviewer does not need to
have the storyteller fill out a new one.
The only exception is if the storyteller authorized only
specific assisters to view and work with his personally
identifiable information, or if he limited his consent in
another way.
Remember that helping someone with his application is a
completely separate process from collecting his story. So, if
in the process of interviewing a storyteller, an assister does
discover a problem with his enrollment application, he
should be referred back to the original person who helped
him.
SCENARIO 4
An Individual Who Agrees to Share His Story
Needs Enrollment Assistance
The scenario: An assister organization (Organization
A) receives a story lead from a third party organization
(Organization B) that features someone who needs help
completing his enrollment. Because the lead is sent to an
assister organization, a staffer reaches out to the person to
offer help.
The authorization needed to move forward: If the
assister organization (Organization A) is going to both help
the storyteller with his application and record his story, it
will need consent for both processes. If Organization A and
Organization B both provide application assistance, and
they work together on story collection, Organization A will
need to confirm with Organization B that the consumer
consented to share his personally identifiable information
with Organization A so that they can follow up with him.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
12
Since both organizations work with the consumer on
application assistance, it is important to remember that
each time a new assister organization works with a
consumer, it has to get consent from him before moving
forward in the application process.
Alternatively, a person will sometimes give his “preliminary
authorization” to an organization—in this instance, the
organization that yours partners with (Organization B)—but
this does not meet all the requirements for authorization
to help with the application. So, the organization that
works with the consumer on both enrollment assistance
and story collection (Organization A) would have to get
full authorization when it talks with him and provides
application assistance.
After the application process is complete, Organization A
may work with the consumer to collect his story. At that
point, Organization A must complete the second consent
form for story collection.
SCENARIO 5
Enrollment Assistance Needs
to Be Provided by a Third Party
The scenario: An organization (Organization C) receives a
story lead, but the lead is from an individual who also needs
application assistance. Organization C does not provide
application assistance, so it needs to refer the individual to
an organization that does (Organization D).
The authorization needed to move forward: If
Organization D provides application assistance but
Organization C does not, Organization C should make
sure that it tells the consumer that his information
may be shared with a third party (Organization D) that
does application assistance. This can be accomplished
through a consent form for story collection or through a
“terms of submission” if the consumer submits his story
electronically. Because Organization C does not perform
application assistance, a specific consent form to release PII
is not necessary.
In this case, the person at Organization C who is developing
the story needs to ask the individual if he would be willing
to be put in contact with an assister at Organization D. The
person developing the story would need to receive consent
before passing along any PII or contact information to the
assister organization (Organization D).
The assister at Organization D needs to maintain
documentation that the consumer gave consent for the
assister to contact him. If the assister helps the consumer
with his application, the assister should follow normal
procedures for obtaining, using, and storing his PII.
Including assisters in story collection provides an incredible
opportunity to raise the voices of individuals and families who
have used enrollment assistance. The experiences of these
consumers can help show others that they, too, might benefit
from sitting down with a knowledgeable assister to walk
through an application and select a plan. Any organization can
engage in collecting and highlighting consumer stories, as long
as they follow the proper guidelines and processes.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
13
Endnotes
1 Centers for Medicare and Medicaid Services, Best
Practices for Handling Personally Identifiable Information:
Fast Facts for Assisters (Washington, DC: CMS, February
2015), available online at https://marketplace.cms.gov/
technical-assistance-resources/assister-programs/bestpractices-for-handling-pii-fast-facts.PDF.
2 Centers for Medicare and Medicaid Services, How to
Obtain a Consumer’s Authorization before Gaining Access
to Personally Identifiable Information (PII), available online
at https://marketplace.cms.gov/technical-assistanceresources/obtain-consumer-authorization.pdf.
3 This explanation is given in response to the question, “If
an assister organization would like to obtain a consumer’s
consent to create, collect, disclose, access, maintain,
store, or use their PII for purposes other than what is
in the scope of their regular assister duties (listed as
“Authorized Functions” in the Navigator and CAC privacy
and security agreements, for example) is this permitted?
Can that consent be included in the same document
the assister uses to satisfy the consumer authorization
requirement under federal guidelines?” See How to Obtain
a Consumer’s Authorization before Gaining Access to
Personally Identifiable Information (PII), op. cit.
4 For the first level of consent (use of CMS model
authorization form or modified authorization form),
assisters must maintain records of consent forms for
at least six years. For more information on storing
and retaining records, see Best Practices for Handling
Personally Identifiable Information: Fast Facts for
Assisters, op. cit., and How to Obtain a Consumer’s
Authorization before Gaining Access to Personally
Identifiable Information (PII), op. cit.
COLLECTING CONSUMERS’ HEALTH CARE STORIES: WHAT ENROLLMENT ASSISTANCE ORGANIZATIONS NEED TO KNOW
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A selected list of relevant publications to date:
Story Bank Toolkit (February 2016)
How to Create a Successful Story Banking
Program (January 2015)
For a more current list, visit:
www.familiesusa.org/publications
Publication ID: 000ENR012216
This publication was written by:
Cate Bonacini, Story Bank Coordinator, Families USA
Elizabeth Hagan, Senior Policy Analyst, Families USA
The following Families USA staff contributed to the
preparation of this material (listed alphabetically):
Nichole Edralin, Senior Designer
Evan Potler, Art Director
Talia Schmidt, Editor
Ingrid VanTuinen, Director of Editorial
© Families USA 2016
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