BATEMAN HORNE CENTER

Empowering Patients, Advancing Research, and Improving Clinical Care for all those impacted by ME/CFS and Fibromyalgia

aka Bateman Horne Center   |   Salt Lake City, UT   |  www.batemanhornecenter.org

Mission

Global End Goal People with ME/CFS, FM, post-viral syndromes, and related comorbidities live improved lives through universal access to evidence-informed, precision medicine. Mission We empower patients, advance research, and improve clinical care for all those impacted by ME/CFS, FM, post-viral syndromes, and related comorbidities. Vision We envision a world where patients with ME/CFS, FM, post-viral syndromes, and related comorbidities are readily diagnosed, effectively treated, and widely met with empathy and understanding.

Notes from the nonprofit

Please contact us to learn more about our organization and our mission to improve access to care and advance research and medical knowledge of these debilitating diseases.

Ruling year info

2002

Executive Director

Rob Ence

Medical Director

Lucinda Bateman MD

Main address

24 South 1100 East, Suite 205

Salt Lake City, UT 84102 USA

Show more contact info

Formerly known as

OFFER

EIN

87-0687610

NTEE code info

Diseases, Disorders, Medical Disciplines N.E.C. (G99)

Research Institutes and/or Public Policy Analysis (W05)

IRS filing requirement

This organization is required to file an IRS Form 990 or 990-EZ.

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Communication

Blog

Programs and results

What we aim to solve

SOURCE: Self-reported by organization

The U.S. Dep. Of HHS considers ME/CFS and fibromyalgia to be debilitating diseases with significant unmet medical need that causes enormous burden for patients, their caregivers, the healthcare system and society. ME/CFS affects an estimated 1-4 million, and fibromyalgia an estimated 10 million people in the U.S., respectively. At least one-quarter of ME/CFS patients are house/bed-bound at some point in their lives. The economic cost in the U.S. is over $60 billion annually. The government has spent minimal resources on research, a biomarker has yet to be identified, and medical providers lack training on how to make a clinical diagnosis and employ mitigating treatments. Those who have been diagnosed report having seen more than five doctors over six years before receiving their diagnosis. The cycle of mismanaged care creates an endless negative feedback look for patients leading to disease advancement, isolation, over prescription/exposure to harmful and often unnecessary medications.

Our programs

SOURCE: Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Improving clinical care for patients with ME/CFS and fibromyalgia

Dr. Lucinda Bateman is a world-renowned clinician and one of the few in the U.S. who treats patients with ME/CFS and fibromyalgia.

Population(s) Served
People with diseases and illnesses
People with disabilities

We operate a robust research department which is working with scientists, physicians, universities and pharmaceutical companies.

Population(s) Served
People with diseases and illnesses
People with disabilities

The Bateman Horne Center delivers comprehensive education and clinical tools to enable providers to meet the demand of specialized health care for patients with ME/CFS, FM, and related conditions. Patients deserve timely, informed, and individualized care.

Within the education department, Bateman Horne Center operates a comprehensive patient education and outreach program including monthly online support groups, and educational resources on a variety of topics such as symptom management, communicating with healthcare providers, applying for work/school accommodations, quality of life, crisis resources, and disaster resources specific for people with complex chronic illness.

Our most utilized resources in the Bateman Horne center YouTube channel that has over 115 videos of educational content for patients, care partners, and medical providers. Visit our website or YouTube channel to access the playlists.

Population(s) Served
People with diseases and illnesses
People with disabilities

Where we work

Our results

SOURCE: Self-reported by organization

How does this organization measure their results? It's a hard question but an important one.

Number of chronically ill patients served

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults

Related Program

Improving clinical care for patients with ME/CFS and fibromyalgia

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

Combines in patient and telemedicine patients, support group, and in-service patient participants.

Number of healthcare providers attending BHC sponsored educational classes

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, People with diseases and illnesses

Related Program

Improving clinical care for patients with ME/CFS and fibromyalgia

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Context Notes

CME courses and other specialty lectures at medical schools and association sponsored events.

Total number of volunteer hours contributed to the organization

This metric is no longer tracked.
Totals By Year
Population(s) Served

Adults, People with diseases and illnesses, People with disabilities

Related Program

Healthcare Provider and Patient Education

Type of Metric

Output - describing our activities and reach

Direction of Success

Increasing

Our Sustainable Development Goals

SOURCE: Self-reported by organization

Learn more about Sustainable Development Goals.

Goals & Strategy

SOURCE: Self-reported by organization

Learn about the organization's key goals, strategies, capabilities, and progress.

Charting impact

Four powerful questions that require reflection about what really matters - results.

The Bateman Horne Center (BHC) is a 501(c)3 nonprofit Center of Excellence (CoE) with a mission to empower patients, advance research and improve clinical care for all those impacted by ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and FM (fibromyalgia), post-viral illness, and related conditions . Our three objectives are, 1) All ME/CFS and FM patients receive improved clinical care, 2) Research is advanced on diagnosis and treatment of ME/CFS and FM, and 3) Patients and their advocates have direct access to education and support.

These are debilitating diseases with significant unmet medical need that cause enormous burden for patients, their caregivers, the healthcare system and society. This health crisis is caused by an absence of diagnostic tests, tools and treatments that perpetuate ME/CFS, FM, and post-viral illness as unsolved medical and scientific mysteries. Our unique value proposition is improving medical outcomes through early diagnosis leading to discovery of diagnostic and treatment biomarkers.

The Bateman Horne Center (BHC) is a non-profit, interdisciplinary Center of Excellence where clinical care, research, and education meet to collectively advance the diagnosis and treatment of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), post-viral syndromes, and related comorbidities.

BHC provides expert consultation and experienced clinical care providing patients with a differential diagnosis and health management plan. 

BHC drives innovative and emerging research pathways to define core signs, symptoms, and decrements in specific functioning.

BHC provides educational resources and programming to informed by our research and clinical care.

Bateman Horne Center (BHC) successfully navigated 2021, our second full year under COVID health protocols, with important advances in the battle against myalgic encephalomyelitis/chronic fatigue syndrome, fibromyalgia, and now long COVID (ME/CFS, FM, LC). Continued support from generous donors and grantors combined with a second federal Paycheck Protection Plan CARES grant (PPP) made this possible. Telehealth is here to stay and has proven to be an important and viable consult delivery tool for care especially with remote and less-mobile patients.

BHC hired two new providers who have quickly embraced the BHC mission and are delivering high quality services under the mentorship of Drs. Bateman and Yellman. This additional capacity gave BHC a unique opportunity to see a group of long COVID patients experiencing long hauler syndrome. This experience provided unique insights to the symptomatic characteristics of patients in their first year of a post-viral syndrome.

BHC’s proactive approach to studying and assisting long COVID patients opened the door to expanded research partnerships with the University of Utah and existing NIH partners. BHC added several high-quality research coordinators that brought a new level of proficiency and expertise to help drive these opportunities.

BHC also strengthened its position as the leader in the production and distribution of educational resources for patients and specifically for providers. We expanded our website offerings and virtual trainings, and have been engaged as the recognized experts on these illnesses for several 2022 Project ECHO® (Extension for Community Healthcare Outcomes) series with key academic partners.

Clinical Care

The pandemic inserted BHC into the global conversation of post-COVID-19 sequelae (PASC or long COVID). BHC contributed its voice and experience and:
Added two additional advance practice clinicians to expand capacity.
Lectured and mentored several specialties across the health care spectrum.
Engaged long COVID patients and collaborated with the U of Utah Long COVID clinic and its providers.

What’s Next
Expand provider and support teams.
Mentor and train providers.

Research

Eligible patients participated in a variety of ongoing research opportunities including biomarker discovery, developing point-of-care measures, and clinical trials. These efforts drive real-time learning by generating knowledge and data that are translated into innovative research projects and partnerships, educational assets, and inform clinical care.

Worked with first year long COVID patients to demonstrate that early diagnosis and management can mitigate progression and inform the root causes of ME/CFS/FM.

Long COVID patients participated in BHC’s NIH-funded ME/CFS research to determine the similarities and differences between ME/CFS and long COVID.

Partnership formed with the University of Utah on the NIH PASC Initiative.

BHC’s unique collective of ME/CFS/FM and post-viral expertise continues to be in demand for research collaborations.

What’s Next
Expand academic partnerships.
Conduct BHC sponsored research.


Education

BHC created education that transforms the way patients are cared for. BHC accelerated its activities to bridge the gap and translate the science into clinical practice throughout 2021 highlighted by:


Increased repository of online resources making BHC’s website the respected/trusted source for researchers, clinicians, patients, and their care network.

Lectured and held continuing education events reaching over 800 clinicians across the United States, Canada, United Kingdom, Australia, New Zealand, and Norway.

Served as an active participant, consultant, and mentor to the long COVID Alliance, University of Utah Health, Utah Medical Association, Canada’s ICanCME Research Network, and others.

New video series on ME/CFS, Orthostatic Intolerance, and long COVID with an aggregate viewership of 30,000 + in the first five months of release.

YouTube asset views during the past 18 months exceeds 210,000 with over 100,000 viewed hours.

Support groups, Q&A sessions with BHC providers.

What’s Next
New and deeper academic collaborations.
New provider materials and mentoring opportunities.

How we listen

SOURCE: Self-reported by organization

Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.

done We demonstrated a willingness to learn more by reviewing resources about feedback practice.
done We shared information about our current feedback practices.
  • Who are the people you serve with your mission?

    Patients and their care partners/families Health care providers Health educators Researchers

  • How is your organization collecting feedback from the people you serve?

    Electronic surveys (by email, tablet, etc.), Focus groups or interviews (by phone or in person), Community meetings/Town halls, Constituent (client or resident, etc.) advisory committees, Suggestion box/email,

  • How is your organization using feedback from the people you serve?

    To identify and remedy poor client service experiences, To identify bright spots and enhance positive service experiences, To make fundamental changes to our programs and/or operations, To inform the development of new programs/projects, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals,

  • What significant change resulted from feedback?

    Changed our intake process for better accessibility and ease of access. Expanded our support groups and improved facilitation techniques based on participant input. Changed the clinic environment for better health protocols and patient comfort items (dimmer lighting, warm blankets, etc.) Created "crash guide" to help manage chronic illness challenges based on input and requests from patient population.

  • With whom is the organization sharing feedback?

    The people we serve, Our staff, Our board, Our funders, Our community partners,

  • How has asking for feedback from the people you serve changed your relationship?

    We consider our community of interest (patients, educators, providers, research partners) the priority of our work and the reason for our existence. All that we do is for the purpose of better communication, better care, more productive results to improve the lives of those impacted by these illnesses.

  • Which of the following feedback practices does your organization routinely carry out?

    We collect feedback from the people we serve at least annually, We take steps to get feedback from marginalized or under-represented people, We aim to collect feedback from as many people we serve as possible, We take steps to ensure people feel comfortable being honest with us, We engage the people who provide feedback in looking for ways we can improve in response, We act on the feedback we receive, We tell the people who gave us feedback how we acted on their feedback, We ask the people who gave us feedback how well they think we responded,

  • What challenges does the organization face when collecting feedback?

    It is difficult to find the ongoing funding to support feedback collection,

Financials

BATEMAN HORNE CENTER
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Operations

The people, governance practices, and partners that make the organization tick.

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Connect with nonprofit leaders

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Connect with nonprofit leaders

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  • Analyze a variety of pre-calculated financial metrics
  • Access beautifully interactive analysis and comparison tools
  • Compare nonprofit financials to similar organizations

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BATEMAN HORNE CENTER

Board of directors
as of 3/18/2022
SOURCE: Self-reported by organization
Board co-chair

Mary Sue Rominger

Independent Consultant

Term: 2015 - 2023


Board co-chair

Ted Kaly

Retired Executive

Term: 2015 - 2023

Dave Mason

Retired Executive

Jessica Turner

Patient Advocate

Veldon Sorensen

Retired Scientist

Peggy Allen

Univ of Utah Nursing

Sharon Donnelly

Patient Advocate

Luke Hansen

Medical Student

Alan Light

Researcher, Educator

Linda Milne

Patient Advocate, Educator

Board leadership practices

SOURCE: Self-reported by organization

GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.

  • Board orientation and education
    Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations? Yes
  • CEO oversight
    Has the board conducted a formal, written assessment of the chief executive within the past year ? Yes
  • Ethics and transparency
    Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year? Yes
  • Board composition
    Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership? Yes
  • Board performance
    Has the board conducted a formal, written self-assessment of its performance within the past three years? Yes

Organizational demographics

SOURCE: Self-reported; last updated 03/17/2022

Who works and leads organizations that serve our diverse communities? GuideStar partnered on this section with CHANGE Philanthropy and Equity in the Center.

Leadership

The organization's leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Male
Disability status
Person without a disability

The organization's co-leader identifies as:

Race & ethnicity
White/Caucasian/European
Gender identity
Female
Disability status
Person without a disability

Race & ethnicity

Gender identity

 

Sexual orientation

No data

Disability

Equity strategies

Last updated: 03/17/2022

GuideStar partnered with Equity in the Center - an organization that works to shift mindsets, practices, and systems to increase racial equity - to create this section. Learn more

Data
  • We review compensation data across the organization (and by staff levels) to identify disparities by race.
  • We have long-term strategic plans and measurable goals for creating a culture such that one’s race identity has no influence on how they fare within the organization.
Policies and processes
  • We seek individuals from various race backgrounds for board and executive director/CEO positions within our organization.
  • We have community representation at the board level, either on the board itself or through a community advisory board.
  • We help senior leadership understand how to be inclusive leaders with learning approaches that emphasize reflection, iteration, and adaptability.
  • We engage everyone, from the board to staff levels of the organization, in race equity work and ensure that individuals understand their roles in creating culture such that one’s race identity has no influence on how they fare within the organization.