FRIENDS OF PATIENTS AT THE NIH
Programs and results
What we aim to solve
Friends of Patients at the NIH was founded over 30 years ago by NIH employees responding to a crucial financial need they saw not being met. Patients from all walks of life were coming to NIH for clinical trials but some could not afford the costs to stay and receive care. Patients and family members were sleeping on the hospital’s floors or in their cars because they didn’t have the funds to pay for lodging while they were taking part in clinical trials. Many of these patients couldn't pay their bills and had to drop out, being forced to walk away from life-changing treatments simply because they couldn’t afford the price of a hotel. NIH employees came together to assist in alleviating that burden by raising funds to provide this much needed assistance. Friends at NIH has continued to deliver that same support by helping thousands of patients remain in treatment.
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
Friends of Patients at the NIH
Friends of Patients at the NIH, formerly Friends of the Clinical Center, provides
financial, logistical and social support to patients while they are receiving
groundbreaking and life-saving treatments at the NIH Clinical Research
Center. We cover unmet needs so that patients can focus on recovery, healing
and fulfilling their crucial role partnering with NIH researchers in advancing
knowledge, discoveries and breakthroughs.
www.FriendsatNIH.org
Please visit our website for more information.
Patient Lodging Program
Receiving care and taking part in NIH clinical trials requires most of our patients to travel across the country or even around the world. The Patient Lodging program offers patients and their caregivers a free place to stay close to the NIH campus during those times where the cost is not covered by the clinical trial or assists with the cost of lodging back in their home state or country when the cost of seeking treatment has depleted their funds.
Transportation
Friends of Patients at the NIH covers travel costs for family and caregivers to come back and forth to the NIH for treatment.
Medical Services
Friends of Patients at the NIH has covered medical insurance payments and the purchase of medical equipment when the clinical trial does not cover those expenses.
Quality of Life Support
Quality of life support means such things as meals or events for those patients at the NIH during their trials to relieve some of the pressure and stress from the treatments. This provides patients with enjoyable time spent with family, friends and caregivers.
Where we work
External reviews
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of patients, caregivers and family members that participated in social activites and outings
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults
Related Program
Quality of Life Support
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Context Notes
Unfortunately due to Covid 19 virus in 2020, we canceled patient outings and activities. We had restructured and created new programs to meet patient needs.
Number of nights patients, caregivers and family members were supported free-of-charge with lodging
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults, Children and youth, Caregivers, Families, People with diseases and illnesses
Related Program
Patient Lodging Program
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Number of patients and caregivers who received direct support for housing, transportation and unexpected medical costs
This metric is no longer tracked.Totals By Year
Population(s) Served
Adults, People with diseases and illnesses, Children and youth, Ethnic and racial groups, Caregivers
Related Program
Friends of Patients at the NIH
Type of Metric
Output - describing our activities and reach
Direction of Success
Increasing
Our Sustainable Development Goals
Learn more about Sustainable Development Goals.
Goals & Strategy
Learn about the organization's key goals, strategies, capabilities, and progress.
Charting impact
Four powerful questions that require reflection about what really matters - results.
What is the organization aiming to accomplish?
Friends jumps in when a patient is weighing whether to drop out of a clinical trial at the NIH due to unanticipated or overwhelming financial or housing needs.
We provide a variety of direct patient support, including:
• lodging in apartments and hotels located immediately adjacent to the NIH campus for patients and families in need of local housing during treatment,
• rent, mortgage payments, and utility payments back home when cash flow is tight or non-existent or the caregiver has had to leave his/her job,
• medical devices like hearing aids when they are not covered by the clinical trial, and
• travel expenses for visits by caregivers and family, both domestic and international.
Helping with direct expenses has been the long-standing hallmark of Friends at NIH. By removing financial anxiety, Friends knows that patients are better able to be full clinical trial participants and concentrate on their treatment and the journey ahead.
In addition, Friends has expanded our services to include social and community activities. We offer: monthly patient events, Sunday dinners for newly arrived patients, art therapy programming for patients in isolation, and special outings for patients and caregivers to have much-needed breaks from treatment. Patients tell us all the time that these special outings and events are critical to their family’s mental health and well-being. Our Patient Lodging Program makes up nearly 65% of the program services provided to families.
What are the organization's key strategies for making this happen?
Friends is one of the three charities housed on the National Institutes of Health campus. We partner with physicians and medical teams to support patients in completing treatment studies and clinical trials. We work with patients and their medical team to help the patients and their families eliminate financial burdens and allow them to focus on healing. We are working on expanding awareness of our organization, increasing our outreach to local stakeholders and growing the number of patients and caregivers we serve.
What are the organization's capabilities for doing this?
We work hand-in-hand with NIH social workers to identify those patients in greatest need of support. Because the social workers at NIH work directly with the patients and their family members they are well situated to determine who among Clinical Center patients need (and qualify for) emergency financial assistance from Friends at NIH. Each social worker evaluates the specific circumstances of the patient and the patient’s family on a case-by-case basis, and determines if the filing of an application with Friends at NIH for financial or other aid would be appropriate.
If the social worker determines that such aid might be warranted, the social worker l helps the patient complete our application form. The social worker then files the application with us on behalf of the patient.
Next, our board of directors--several of whom are former or current NIH patients themselves--meet to weigh each request against our own capacity. With our goal of assisting as many patients as possible, our board looks at the number of requests, our availability of lodging, and the amount of funding necessary to complete the request.
If the application is approved, the social worker will deliver a check (or checks) to the patient drawn by the Friends at NIH to the order of the appropriate third party (or third parties) to pay airfare, medical expenses, rent or mortgage.
In 2022 we contracted a grant writing company to help with our grant proposals and major donor outreach. We hope that this will continue to be successful and bring additional funding to continue current programs and expand our housing for patients in need.
What have they accomplished so far and what's next?
Over the years, Friends at NIH has given close to two million dollars in funding to help with needs such as rent, mortgages, utilities back home, transportation of caregivers and bone marrow donors, local housing for patients and their families, or other unmet needs.
In doing so, Friends at NIH not only assists patients with treatment but also NIH researchers in advancing knowledge, discoveries and breakthroughs, fulfilling a crucial role in helping millions of future patients who benefit from the discoveries made during the clinical trials.
Since 2017 our local housing program has grown to now host four furnished patient apartments near the NIH campus. Friends at NIH is also partnering with the NCI cancer patient units to provide much needed comfort items and arts and crafts for patients confined to their rooms in the hospital during treatment and recovery.
How we listen
Seeking feedback from people served makes programs more responsive and effective. Here’s how this organization is listening.
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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 identify where we are less inclusive or equitable across demographic groups, To strengthen relationships with the people we serve, To understand people's needs and how we can help them achieve their goals
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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 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
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What challenges does the organization face when collecting feedback?
We don’t have the right technology to collect and aggregate feedback efficiently, It is difficult to find the ongoing funding to support feedback collection
Financials
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Operations
The people, governance practices, and partners that make the organization tick.
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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Connect with nonprofit leaders
SubscribeBuild relationships with key people who manage and lead nonprofit organizations with GuideStar Pro. Try a low commitment monthly plan today.
- Analyze a variety of pre-calculated financial metrics
- Access beautifully interactive analysis and comparison tools
- Compare nonprofit financials to similar organizations
Want to see how you can enhance your nonprofit research and unlock more insights? Learn More about GuideStar Pro.
FRIENDS OF PATIENTS AT THE NIH
Board of directorsas of 11/02/2022
Jay Shah
Octo Consulting
Term: 2021 - 2023
Andrew Derr
Deloitte
Jerry Sachs
Retired
Donald Hill
Foundation for the NIH
Richard LaFleur
Grant Thornton
Julie Wolf-Rodda
Foundation for the NIH
David Liola
Armis, Inc.
Board leadership practices
GuideStar worked with BoardSource, the national leader in nonprofit board leadership and governance, to create this section.
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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
Who works and leads organizations that serve our diverse communities? Candid partnered with CHANGE Philanthropy on this demographic section.
Leadership
The organization's leader identifies as:
Race & ethnicity
Gender identity
Transgender Identity
Sexual orientation
No data
Disability
No data
Equity strategies
Last updated: 10/31/2022GuideStar 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
- We review compensation data across the organization (and by staff levels) to identify disparities by race.
- We ask team members to identify racial disparities in their programs and / or portfolios.
- We analyze disaggregated data and root causes of race disparities that impact the organization's programs, portfolios, and the populations served.
- We disaggregate data to adjust programming goals to keep pace with changing needs of the communities we support.
- We employ non-traditional ways of gathering feedback on programs and trainings, which may include interviews, roundtables, and external reviews with/by community stakeholders.
- 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.
- 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.