Designed to fail: Measurement of patient experience


Mon, 10/03/2022 – 21:45

By Mary Giliberti, Chief Public Policy Officer

If you have ever been in a general hospital, you have probably received a survey asking you about your experience. Hospitals are required to administer the Hospital Consumer Assessment of Healthcare Providers and Systems survey (HCAHPS) to anyone who spends at least one night in the hospital. The results of the survey determine a percentage of Medicare payments and are reported on the hospital compare website, so hospitals are very incentivized to score high on these surveys. However, there are two groups of patients who are excluded from taking the HCAHPS survey – those who are dead, and those who have a primary behavioral health diagnosis.

Now, it is obvious why dead patients are exempt from taking the survey. But why are people who have panic attacks or attempt suicide completely excluded? The federal Agency of Healthcare Quality (AHRQ) developed the HCAHPS survey and all they were able to tell us was that it was not tested on people with mental health conditions, which just means that discrimination against people living with mental health conditions started when the survey was first piloted in 2003 and continues nearly two decades later. The HCAHPS only applies to general hospitals. Specialized psychiatric hospitals are not required to do a patient experience survey for any patients and they are certainly not held accountable through payment or transparent reporting. 

This means that if you are hospitalized for a cardiac condition or a stroke, your experience matters very much to the hospital staff treating you. But if you are hospitalized for a mental health condition, in a general or psychiatric hospital, your experience does not count. You don’t have to be familiar with the reams of literature and caselaw on horrific psychiatric hospital conditions to know that this is problematic and people with mental health conditions have suffered some of the worst experiences of any patient group. When the National Alliance on Mental Illness (NAMI) sent out a survey on emergency room hospital care, over a thousand people responded, and two in five said their experience was bad or very bad with the majority of the rest saying it was both good and bad. NAMI and Mental Health America, where I work, have sent out alerts, and people with mental health conditions and their families have filed hundreds of comments over several years with the Centers of Medicare and Medicaid Services (CMS) and AHRQ asking them to fix this overt discrimination and remove the exclusion of people with mental health conditions, to no avail.

It is important to understand the questions asked by the HCAHPS. The survey asks questions in the following areas:

1) How often did nurses communicate well with patients?

2) How often did doctors communicate well with patients?

3) How often did patients receive help quickly from hospital staff?

4) How often did staff explain about medicines before giving them to patients?

5) How often were the patients’ rooms and bathrooms kept clean?

6) How often was the area around patients’ rooms kept quiet at night?

7) Were patients given information about what to do during their recovery at home?

8) How well did patients understand the type of care they would need after leaving the hospital?

9) How do patients rate the hospital?

10) Would patients recommend the hospital to friends and family?

We in the mental health advocacy community do not see anything in those questions that are inapplicable or problematic when asked of people with mental health conditions. The community has asked AHRQ and CMS to start asking these general questions of everyone and then continue testing to determine if additional questions or different methods of administering the survey would be helpful. This would allow cross-hospital comparisons between psychiatric and general hospitals for mental health care and comparisons between the experience of those with mental and physical health conditions in general hospitals. One of the express goals of creating the HCAHPS was to allow objective and meaningful ways of comparing hospitals on items that are important to people. Data also could identify disparities in experiences by race, ethnicity, and other demographics. 

I can hear the agencies, hospitals, and private equity firms that own hospitals saying – it’s too complicated and needs additional study. But changes can be made now with additional study coming later. This survey asks general questions about care that are applicable to everyone. Yet one group of people who are particularly vulnerable to bad experiences are excluded. The federal government has complete authority to fix the problem and they have not done so and indeed, there has been no evidence that AHRQ and CMS are coordinating and intend to fix the problem in a timely way. The last regulation issued on 2023 psychiatric hospital quality measures did not propose or change any of the reporting measures on patient experience despite acknowledging the many comments submitted by individuals and families and gave no information about when they would change them.

Hospital services are not the only services lacking patient experience data. For example, to date, the new 988 crisis call system lacks a systematic, transparent, patient experience measure that will be applied to all call centers and all parts of the crisis system. Patient experience should be at the foundation of all mental health care – inpatient and outpatient – and should be measured using standardized instruments by everyone delivering it. That includes hospitals, mental health centers, health centers, crisis call centers, mobile teams, and more. 

If the Department of Health and Human Services (HHS) agencies required transparent patient experience measures for inpatient and outpatient behavioral health care and tied them to payment, we would see a radical change in the way care is delivered. Hospitals and other providers would be incentivized to learn from and implement quality improvement efforts based on the voices of people receiving services, to hire more people with lived experience as staff, and to change practices that currently dehumanize and traumatize people receiving mental health services. This would begin to align market forces so people would have information to guide their choices and providers would be fiscally incentivized to improve quality. Linking patient experience to payment and facilitating transparent comparison of facilities is designing for success. Excluding people with mental health conditions from patient surveys or not asking about patient experience at all is designing to fail.

Read the introduction to this blog series.


The Capital City Emergency “Level II” Trauma & Wellness Center will house a “state of the art” Outreach Community Resource Center, that will provide case management, mental health community advocacy, and oversight from the M.I. Mother’s Keeper mental health advocates. 
The Capital City Emergency “Level II” Trauma & Wellness Center will offer patrons access to immediate coverage by general surgeons as well as coverage by the specialties of orthopedic surgery, neurosurgery, anesthesiology, emergency medicine, radiology and critical care.
Our goal is to help people in the best way possible in an effort to preserve and to save more lives in the Nation’s Capital and beyond.

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Code Red
Gunshot Victim
Life Threatening Wounds
Physical Assault Victim
Severely Injured Auto Accident Victim
Burn Victim
Choking & Breathing Obstructions
and more…


Child Sex Assault Victim
Domestic Violence Victim
Drug Overdose
Rape/Sex Crime Victim
Suicide Watch
Trafficking Victim
Nervous Breakdown
and more…

Mental Health

At Capital City Emergency Trauma & Wellness Center patrons with mental health emergencies that include life threatening situations in which an individual is imminently threatening harm to self or others, severely disoriented or out of touch with reality, has a severe inability to function or is otherwise distraught and out of control, will have access to quality and psychiatric emergency services and referrals.

Physical Health

Whether your life threatening medical emergency involves excessive or uncontrollable bleeding, head injury. difficulty with breathing, severe pain, heart attack, vision impairments, stroke, physically collapsing, or seizure related, rest assured that our professionals will properly assess and evaluate the level of response that will be most needed to help provide stabilized care solutions and minimize complications as well as reduce early mortality.

Holistic Healthcare

We offer healthcare solutions that will support the whole person which includes their physical, psychological, emotional, social, & spiritual wellbeing. Research supports that because your mental state can affect your overall health we support and offer the inclusion of complimentary and alternative medicine(CAM) practitioners and naturopathic doctor recommendations and referrals as a part of our Outreach Community Resource Center’s care regimen and support.


Emergency care can typically result in traumatic injuries for which rehabilitation becomes an essential component of care in trying to achieve the best long-term outcomes for the patient. In addition to speeding up recovery times and helping to prevent further complications, rehabilitative care also helps to support a patient’s self-managed recovery once discharged from our facility. Our Outreach Community Resource Center works closely with our trauma center’s discharge department to assure that patrons requiring these services are linked with qualified professionals who will be accountable to the standard of care required to help the patron be successful in their recovery.

Social Services

Our “state of the art” Outreach Community Resource Center intends to promote “expansive” beneficial community enriching services, programs, case management, & linkage to “approved” partner resources and supports in all of the following intended areas and more:

Social Services

  • Clothing
  • Food Pantry
  • Housing/Shelter
  • I.D. Credentials
  • Senior Wellness Check
  • Toiletries
  • Transportation
  • Etc.

Extended Family Services

  • Child Care
  • Credit Counseling
  • Family Court Services
  • Legal Aide

Career Training

  • Apprenticeship programs
  • Computer/Graphics Training
  • Culinary Program  
  • GED Courses
  • Hospitality Training
  • Job Etiquette & Grooming
  • Resume’ Prep
  • Sales Training
  • Software/Technology workshops
  • Small Business Training

Return Citizen
Program Partner
(Bridging the Gap)

  • Case Management
  • Temporary Boarding/Housing
  • Transitional Program Registration

Prevention/Intervention Outreach,
Workshops, & Programs

  • After-school Behavioral Health Program
  • Civic Engagement / Volunteer Sign-up
  • Fatherhood Rites of Passage
  • Gun Violence Town Hall Forum
  • Life Coaching & Coping Strategies
  • Marriage Counseling Workshops
  • Medicare Informational Workshops
  • Mentorship Training
  • Parental Classes
  • Support Groups
  • Town Hall Discussions
  • Violence De-Escalation Training
  • Voter Registration

Nutritional Outreach

  • Cooking Demonstrations
  • Dietary Programs
  • Exercise Classes
  • Recipe Sharing Workshops
  • Meal Prep

Community Outreach

The Healthy DC & Me Leadership Coalition is partnering with the M.I. Mother’s Keeper Mental Health advocacy organization to provide outreach services on the community level as an aid in reducing the existent health inequities that many District citizens are facing as a direct result of the presence of debilitating social determinants and the lack of culturally appropriate care choices and realities for community members residing in marginalized and lower-income communities.

It is the vision and intentions of the M.I. Mother’s Keeper Mental Health Advocates organization to help improve the quality of living for citizens living in our Nation’s Capital and beyond by overseeing the delicate linkage to services and by maintaining higher standards of care accountability for deserving citizens of the Nation’s Capital.

For more information or to enroll as one of our service providers, please email us at: