Evaluation of Language Access Policies

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Evaluation of Language Access Policies
Procedures for a National Nonprofit Organization

• Martha E. Burton Santibáñez
• Michelle A. Scott, MA, RN
• International Medical Interpreters Association
  (IMIA) Conference
• October 11, 2008

2
National Marrow Donor Program

• Coordinating Center located in Minneapolis, MN
• 750 employees and 100 volunteers nationally

3
Meaningful Access?

• How does the National Marrow Donor Program
  (NMDP) ensure meaningful access to cell therapies
  for all of the people we serve or encounter?
• Evaluate the process for development of
  accessible materials
• Prioritize which documents should be
  translated/made accessible first
• Assess which strategies would be most effective
  for our audiences
• Implement recommendations

4
NMDPs Mission

• We save lives through cellular transplantation
  science, service and support
• We
• Recruit and support donors
• Support patients
• Educate doctors
• Advance science

5
The Need

• 70 of patients who need a transplant will not
  find a suitable match in their family
• 10,000 Americans get life-threatening diseases
  that can only be cured with a marrow or cord
  blood transplant from an unrelated donor
• The NMDP has facilitated 30,000 transplants
  since 1987
• 72 of transplants are made up of leukemias,
  lymphomas or other blood cancers
• 35 of NMDP transplants in 2007 were for patients
  aged 50 and older

6
The Worlds Largest Donor Registry

• The NMDP
• Recruits committed donors (33K/month)
• Spearheads the entire donor search and matching
  process
• Through our Registry, patients have access to
• 7 million potential bone marrow donors
• 70,000 cord blood units donated by parents after
  their babys birth
• 11 million additional donors and 290,000 cord
  blood units around the world through our
  cooperative agreements with international
  registries in more than 35 countries

7
Match Challenges

• Because HLA tissue traits are inherited, a
  patients most likely match is someone of the
  same racial or ethnic heritage.
• Some patients are unable to find a match because
  of the rarity of their tissue traits.
• Some tissue traits are more likely to be found
  among people of a particular racial or ethnic
  heritage.
• Recruitment of adult volunteers and cord blood
  donors from underrepresented racial and ethnic
  communities helps to add new tissue types to the
  Registry.

8
NMDP Partnerships

• The U.S. government has entrusted the NMDP to
  operate the C.W. Bill Young Transplantation
  Program, the federal program supporting bone
  marrow and cord blood donation/transplantation
• Network centers more than 490 leading
  hospitals, blood centers, laboratories and donor
  recruiters
• Agreements with cooperative donor registries
  access to more than 11 million donors and 290,000
  cord blood units
• Partnerships with corporations, service
  organizations, student groups, faith-based
  communities and other organizations

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The NMDP Network
169 Transplant Centers
73 Donor Centers
89 Apheresis Centers
10 Recruitment Groups
NMDP Coordinating Center
24 Cord Blood Banks
97 Collection Centers
26 HLA TypingLaboratories
24 Cooperative Registries
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Creating Our Context

• 2. Evidence-based Practice
• Create credibility
• Maintain consistency
• Build quality measurement

• 1. Internal Data
• Statistics/Reports
• Finances
• Requests
• Policies

• 3. Similar Organizations
• Benchmark
• Opportunities for partnership
• Industry leadership

• 4. Federal Agencies
• Contractual obligations
• Align data collection/reporting
• Federal guidance

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What Impacts Access to Transplant?

• Genetic and Medical Factors
• HLA/Haplotype
• Donor match
• Donor availability
• Diagnosis
• Disease stage
• Pre-existing conditions
• Language, Culture Literacy
• Health Literacy
• Primary language
• Culture/Ethnicity
• Belief systems

• Access to Care
• Available oncologist
• Referral timing
• Transplant center consult
• Insurance coverage
• Financial resources
• Committed caregiver
• Environment Geography
• Distance to medical care
• Reliable transportation
• Safe housing
• Support network for transplant and survivorship

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Key Components of Access

• Literacy
• Plain language, active tense, formatting
  strategies
• Language
• Limit access to timely health care, communication
  of symptoms, understanding of medical
  instructions and compliance
• Culture
• The framework of values, beliefs and practices
  that impact how transplant is viewed and used
• The ability of department staff to provide care,
  information and resources to patients and
  consumers with diverse values, beliefs and
  behaviors

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LEP Access Milestones

• 2003
• Redesign of existing translated materials
• 2004
• Development of first audio resource
• Tracking language requests
• Translation Process Evaluation Recommendations
  report (USDOL template)
• Bilingual case manager position created
• 2005
• Dedicated role in Marketing Communications
  created (0.5 FTE)
• Survey of domestic transplant centers
• Identification of HRSA to support translation
• Start of TalkingTransplant.org
• 2006
• Review modification of translation policies
• Expansion of translated materials based on DHHS
  guidance

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Transplant Center Survey Results

• Most respondents cited limited bilingual staff
  time to locate resources as the greatest barriers
  to fulfilling language requests.
• Most respondents also reported language requests
  are often met (66) or always met (13).
• The most commonly used resources in meeting
  language requests
• bilingual staff (68)
• family/friends of patients (51)
• full-time staff interpreters (42)
• phone or videoconferencing service (35)
• The most requested language is Spanish, followed
  by Chinese, Russian, Arabic and Korean.
• The most difficult language requests to meet were
  Asian languages, followed by Russian and Arabic.

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Assessing Our Responsibility

• The U.S. Department of Labor (USDOL) set four
  factors to determine what translation services to
  provide
• Demographics The number of LEP persons eligible
  to be served or likely to be encountered
• Frequency The frequency with which LEP persons
  come into contact with the program
• Importance The nature and importance of the
  program, activity or service provided to LEP
  persons
• Resources The resources available and the costs

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Patient Demographics

• Each year, more than 30,000 people are diagnosed
  with a disease that could be treated by a marrow
  or cord blood transplant
• 17.6 (5,280) estimated to speak a primary
  language other than English (2000 U.S. Census)
• 7.9 (2,370) estimated to be limited-English
  proficient (LEP)
• Language is a significant barrier to obtaining
  meaningful access to programs and services for
  this group
• New treatment considerations for more diverse
  populations (UCB, hemoglobinopathies, etc.)
• Expanded global partnerships

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Frequency of Contact

• LEP persons contact the OPA through a variety of
  access points, including
• www.marrow.org/patient over 1,000 hits/month on
  translated resources pages
• Case managers, toll-free phone number 20
  contacts/month
• Office of Patient Advocacy resources almost 700
  non-English language resources sent each month
• The level of need was disproportionately low
  given the number of expected contacts

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Resource or Service Importance

• The more important the activity, information,
  services or program, or the greater possible
  consequences of contact with LEP individuals, the
  more important it is that language services are
  provided
• Prioritize vital services
• Identify gateway documents

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Importance Availability of Resources

• The level of need is rated high due to the
  consequences of inaccessible treatment
• Must balance need vs. available resources
• General program income
• Sunk costs (NMDP staff time)
• Federal funding contracts (Navy, HRSA)
• External grants (CDC, NCI)
• Applied federal reasonable steps standard do
  the costs imposed substantially exceed the
  benefits?
• Carefully explore the most cost-effective means
  of delivering competent and accurate language
  services
• Determine capacity to develop and maintain
  quality, medically accurate documents

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Setting LEP Priorities

• Factors considered by NMDP in addition to broad
  U.S. Census demographics
• OMB-designated racial or ethnic minority group
• Low access to transplant
• High LEP within a language community
• Anticipated changes in language population size
  within the next 5 years
• High levels of transplantable diagnoses within a
  language group
• Geographic distribution of languages in relation
  to individual transplant centers

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Priority Languages for Patients
Tier Language Available Materials
1 Spanish Almost 100 by FY09 (including multimedia)
2 Chinese (Traditional) Chinese (Simplified) Vietnamese Korean Vital documents Many educational or marketing materials Print-on-demand Limited multimedia
3 Tagalog Portuguese Vital documents Some educational or marketing materials Print-on-demand
4 Arabic Hindi Hmong Polish Russian French German Italian Vital Documents Print-on-demand
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Access Considerations

• How do we provide meaningful LEP access to our
  programs and services?
• How do we meet and surpass our ethical and legal
  obligations?
• How do we expand the capacity of the NMDP Network
  and our partners? Where?
• How do we responsibly manage our resources?
  Where do we secure new resources?

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The Next Step

• The National Marrow Donor Program (NMDP)
  identified the need to provide accessible
  communications for two of its primary audiences
  donors and patients.
• Includes a large potential and actual pool of LEP
  individuals who
• Speak proficient English for daily use, but are
  not conversant for medical themes
• Speak English well, but do not read English well
  or at all
• Read English well, but do not speak English well
  or at all
• Do not speak or read English well or at all
• The NMDP contracted with Voices For Health, Inc.
  for four months in 2007 to conduct a
  comprehensive language access audit of the
  coordinating center.

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Audit Objectives

• Identify which areas of regulatory compliance are
  adequate or need improvement
• Analyze cost-effectiveness of bilingual staff and
  contracted language services
• Determine policy and procedure recommendations
  for quality assurance
• Compare NMDP language access with other
  organizations and best practices

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Guiding Questions Compliance

• Is the NMDP in compliance with the LEP language
  accommodation requirements of Title VI?
• Which areas are adequate and which need
  improvement?
• Is the NMDP in compliance with ADA requirements
  for deaf and hard-of-hearing clients?
• Which areas are adequate and which need
  improvement?

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Guiding Questions Effective Resource
Utilization

• Are personnel at the NMDP utilized effectively
  from cost and quality considerations?
• Does the NMDP receive adequate contract services
  from cost and quality considerations?

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Guiding Questions Quality Assurance

• What policies and procedures need to be
  implemented to assure quality of oral and written
  communication to LEP and deaf clients?
• Who should be responsible for implementing
  quality assurance measures?

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Guiding Questions Best Practices

• How does language accommodation by the NMDP
  compare with other organizations with similar
  target communities and scope of work?
• What practices can the NMDP model after
  organizations recognized for Best Practices?

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Areas of Evaluation

• Administration
• Leadership
• Operations
• Policies Procedures
• Client Demographics
• Service Delivery
• General
• Interpreting
• Translation

• Regulatory Compliance
• Title VI
• FDA
• ADA
• Financial Resources
• Data Collection Reporting
• Bilingual Staff
• Interpreting Services
• Translation Services

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Audit Methods

• Discussions with key staff
• Department survey
• Analyze invoices for language services
• Review SOPs and service agreements
• Review English translated documents
• Review OPA language access reports
• Benchmark survey of other organizations
• Reference language industry standards
• Analyze regulatory guidelines

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Benchmark Survey

• 16 organizations of similar size and scope
  invited to participate, 7 completed online survey
  (47)
• Provide similar services (advocacy, outreach,
  education)
• Language access data related to information and
  services was gathered from the websites of all of
  the organizations that were invited to
  participate with the online questionnaire.
• translated documents available online
• translation of branded materials
• voicemail options
• Used to compare information available on the NMDP
  website

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Audit Results

• Results showed both strengths and room for
  improvement in
• Regulatory compliance
• Policies and procedures
• Staffing
• Contracting
• Quality assurance
• Data collection

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Administration
Strengths Donor Availability Multicultural Affairs committee Dedicated position to address language access Weaknesses Non-standardized document labeling filing
Benchmarks Dedicated staff Above average Importance of language access Average Recommendation Standardize document labeling and filing
34
Policies Procedures
Strengths SOP for document translation and review Service agreements with translation and interpreting providers Weaknesses No written organization-wide language access policy
Benchmarks Written policy Average Recommendation Develop written language access policy
35
Client Demographics
Strengths 4 methods of collecting patient and donor data Weaknesses Language not mandatory patient/donor data field
Benchmarks Collect data Above average Methods of data collection Average Recommendation Require reporting of patient/donor language
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Service Delivery - General
Strengths Tuition reimbursement available for language classes 24 hour language access Donor satisfaction survey in development Weaknesses Lack of staff training about language access issues Lack of grievance procedure
Benchmarks Staff training Average Language access Average Recommendation Develop procedure provide client feedback about language access
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Service Delivery - Interpreting
Strengths Telephone interpreting available in multiple languages Weaknesses Lack of knowledge about how to access to phone interpreters Lack of staff training about how to effectively use phone interpreters
Benchmarks Training to use phone interpreters Average Recommendation Train all staff about how to access phone interpreters and use them effectively
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Service Delivery - Translation
Strengths Documents in 5 non-English languages on website Weaknesses Lack of knowledge about how to access translated documents www.marrow.org not translated
Benchmarks Website translation Below average Translated documents on website Above Average Recommendation Develop standardized staff trainings on accessing Website translation Below average
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Regulatory Compliance Title VI
Strengths Demographic data collection Access points identified Many vital documents translated to threshold languages Qualified interpreters available Weaknesses Lack of staff training Some vital documents not translated to threshold languages Use of lay interpreters
Benchmarks Compliance with Title VI Above Average Recommendation Train staff about Title VI Translate vital documents to Tagalog Assure use of qualified interpreters
40
Regulatory Compliance - FDA
Strengths Research consent forms translated Weaknesses Translated research consents not available in materials catalog
Benchmarks N/A Recommendation Translate all research consents as appropriate Include research consents in materials catalog
41
Regulatory Compliance - ADA
Strengths Sign language interpreters provided for face-to-face encounters Weaknesses No tracking data for sign language interpreters available
Benchmarks N/A Recommendation Standardize tracking of sign language interpreter utilization
42
Financial Resources
Strengths Navy funding for donor translations Weaknesses Target word translation pricing Phone interpreting volume discount not applied
Benchmarks Cost effectiveness Above Average Recommendation Request source word translation pricing Request volume discount for phone interpreters
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Data Collection Reporting
Strengths Language needs documented by a variety of methods OPA language utilization assessment Weaknesses No SOP for identifying donor/patient primary language No tracking for donor center phone interpreter utilization
Benchmarks Identifying primary language Average Documenting primary language Above Average Recommendation SOP to identify donor/patient primary language Unique telephone access codes for each donor center
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Bilingual Staff
Strengths 13 FT bilingual employees Weaknesses No standardized process to identify bilingual staff or notify other staff who they are No standardized process to assess qualifications of bilingual staff
Benchmarks Bilingual employees Above Average Process to assess bilingual skills Average Recommendation Identify bilingual staff Assess skills of bilingual staff
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Interpreting Services
Strengths High utilization of telephone interpreting services Weaknesses No SOP for interpreting services Use of untrained bilingual staff as interpreters
Benchmarks Use of professional interpreters Average Interpreter availability Average Recommendation Train bilingual staff as interpreters
46
Translation Services
Strengths Various documents available in up to 15 languages Prompt turnaround time Weaknesses A number of vital documents not translated No standardization of branding translation No standardized style guide
Benchmarks Provision of translated materials Average Formats of translated materials Average Process Average Recommendation Translate vital documents Approve standardized branding translations for various languages Create style guide
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Broad Findings

• Overall, the NMDP exhibits a number of strengths
  in the area of language access, including
• A broad range of patient and donor information
  available in print and online in as many as
  fifteen (15) non-English languages
• The availability to connect callers to telephone
  interpreters in over one hundred (100) languages
• A call center staffed with bilingual employees
• An effective, comprehensive system for collecting
  or identifying the language demographics of
  patients and donors

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After the Audit Successes Challenges

• Successes
• Substantial financial support for language access
  resources
• New reporting mechanisms to document needs of
  special populations and organization responses
• More staff positions with focus on access
  special populations
• Increased focus on training technical
  assistance for staff and providers
• Challenges
• Organization-wide policy still in development
• New strategic process competing for time and
  resources
• Inconsistent awareness and use of resources
  within the Network and Coordinating Center

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Contact Information

• Michelle A. Scott, RN, MA
• President CEO
• Voices For Health, Inc.
• Ph 800-VFH-3347
• E-mail michelle_at_voicesforhealth.com
• Web www.voicesforhealth.com
• Martha E. Burton Santibáñez
• Program Specialist Medically Underserved
  Populations
• Office of Patient Advocacy
• National Marrow Donor Program
• Ph 612-617-8336
• E-mail mburton_at_nmdp.org
• Web marrow.org/patient