HCMA Recognized CENTERs OF EXCELLENCE

ADVOCACY

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C-O-E stands for Center of Excellence, but what is that?

Just as HCM is a variable condition, HCM Centers are also highly variable in services and experience level. Some programs have decades of experience, strong surgical programs, extensive publications in scientific literature, and teams of sub-specialists specifically dedicated to HCM and extensive outreach programs. Other programs may be newer, refer out for surgery, refer to sub-specialists who are not part of the HCM team, have limited scientific publications, and limited community outreach.

Generally speaking, a Center of Excellence, is a team of people that promotes collaboration and uses best practices around a specific focus area to create positive outcomes for patients. Many hospitals and clinics have Centers of Excellence for numerous disease states such as Cancer, Diabetes, Alzheimers, etc. COEs also exist for treating patients with HCM.

To qualify as an HCMA Recognized Center of Excellence, a program must provide high-quality care to patients with HCM in accordance with guidelines and be dedicated to treatment and research in the area of HCM.

All recognized Centers have been evaluated by the HCMA in the following areas:

Expertise
Volume of care
Quality of research
Patient communication and responsiveness
Patient and Medical Education
Facilities

It is important to check with your insurance provider prior to making an appointment at a center. The HCMA does not endorse any particular program.

Search our video archive for more content featuring Centers of Excellence from the Big Hearted Warriors Tour.

How Does A Program Become An HCMA Recognized Center Of Excellence?

The HCMA does not seek out programs for approval. Instead, programs that have already been established contact the HCMA for an application. The director of the program typically files the application, which contains several parts:

Basic information about center such as location, phone numbers, contact people

Services offered by the program as well as referral arrangements

Research interests

Key team members

Disclosures (If any team members have conducted industry funded research)

We also request several attachments such as:

Curriculum Vitae for all physicians and key members working within the program

Recent articles and abstracts about HCM that were published by the center and/or participating physicians

A list of IRB approved research programs

The program's business plan to ensure that the program is sustainable

Once the completed application and all attachments have been received, a site visit is scheduled. Lisa Salberg, the HCMA's Founder and CEO, personally visits each location and speaks with every team member from the director, surgeons, and physicians to the person charged with scheduling appointments to make sure the program is patient-centered and runs efficiently. Specifically, each center is evaluated to make sure:

All team members are knowledgeable about HCM

The support staff is sufficient to create a responsive, patient-centered environment

A high volume of HCM patients are/have been seen at the location

The program has the support of the institution, which will allow it to maintain appropriate staff and funding, and provide medical and patient education to the surrounding community

Following the site visit, all materials and notes are reviewed, a recommendation is written, and the findings are presented to the HCMA's Board of Directors. Once the program has been approved as an HCMA Recognized Center of Excellence, the name and contact information of the program is listed in the HCMA's online directory. HCMA Recognized Centers of Excellence are expected to maintain communication with the HCMA by submitting updates and reports on a yearly basis (or when something changes). They must also conduct community education once every three years. If the program does not comply, or if a major structural change occurs within the program, the center may be delisted.

What does it mean if a center is delisted?

As previously mentioned, when a center is recognized by the HCMA as a Center of Excellence, they are "listed" in our directory. When we say a center has been "delisted," it means that they have been removed from our list of HCMA Recognized Centers of Excellence. This does not necessarily mean that the Program is bad or that they offer poor services. What it does mean is that the HCMA noticed significant changes within the Program and that it needs to be re-evaluated to ensure it still offers the high quality of expertise and responsiveness that you should expect from a Center of Excellence.

If there is a problem or change with a Center of Excellence, how does the HCMA find out?

Usually, we find out about changes in a program when we request annual reports and updates from the centers. Other times, we find out from clients that their experience was not what they would expect from a Center of Excellence. We take these reports seriously and do our best to either facilitate communication with the center or to help the center remedy the issue.

If I am having trouble at a Center of Excellence (Can't get in touch with the center, can't get an appointment, questionable care, etc.), what can I do?

If you are disappointed with the care you receive at an HCMA Recognized Center of Excellence, you can inform the HCMA at support@4hcm.org or call the office at 973-983-7429. Every program does its absolute best to offer the highest quality of care to HCM patients. We work closely with each of these programs to identify potential issues and help them meet their goals of providing the best outcomes for patients across the country.

Why Should I Go To An HCMA Recognized Center Of Excellence?

If you have not yet been evaluated by an HCMA Recognized Center of Excellence, you may be wondering what the difference is between the care offered by a COE and the care you receive at your community cardiologist.

Expertise
Being evaluated by a Center of Excellence means that you will be cared for by a team with subspecialty care experience. Rather than receiving just one person's opinion about a condition with which they may have minimal clinical exposure, you will have access to a group of clinicians with extensive exposure in the area of HCM.

Volume of care
On average, a general cardiologist sees between five and ten people with HCM in his or her practice. A COE program sees hundreds or even thousands of people with HCM. Having a larger number of patients with HCM means they have seen more variations of the disease. In other words, your symptoms are much less likely to surprise them.

Facilities
It may require travel, but facilities are an important aspect of effective, high-quality care in HCM. Without high-quality imaging, it is difficult to have a clear understanding of your specific anatomy and your HCM. COEs have been evaluated by the HCMA to ensure that they have high-volume imaging and are supported by institutions that understand the importance of up-to-date technology.

While COEs do offer high quality care, not everyone is able to see a COE for primary management of their HCM. Depending on what you and your doctor decide, you may, for example, want to see your community cardiologist for maintenance and see your COE once a year for management. Several centers now also offer services for record and management review to ensure that your care is in line with HCM treatment standards. Whatever you decide, the important thing is to get the information that you need to make the decisions that are best for you and your care.

High volume care centers for HCM have advanced research and improved outcomes and quality of life. The HCMA works hard to ensure patients know where to access high volume care, and likewise, helps community physicians know where to refer patients for care. The goal of the HCMA is simple: to provide you, your family, and those you love with HCM the highest quality of life possible. [i] [ii] [iii] For more information, please contact the HCMA at 973-983-7429 or support@4hcm.org

How Do I Make An Appointment With A Center Of Excellence?

It is important to note that making an appointment with the affiliated medical center is not the same thing as making an appointment with the HCMA Recognized Center of Excellence. So, how can you make sure you're being seen by the recognized HCM program and not just a doctor from the same hospital?

The best way to ensure that you are contacting the appropriate department of a center for your HCM appointment is to refer to the HCMA's directory or to visit the HCM Program's website directly for their appointment setting phone number. For more information about Centers of Excellence near you, please call the HCMA at 973-983-7429.

The HCMA Board of Directors, with assistance from the HCMA Advisors, shall establish criteria and procedures to designate HCM Centers of Excellence (CE) or HCM Program (HP). A CE or HP shall be named only after meeting all HCMA requirements. Upon designation, CEs and HP's shall be listed in a ranking system to assist patients, families and referring health care systems in making choices for use of a CE or HP best for their situation. The HCMA shall not "endorse" a specific program and shall not guarantee services provided. Further the HCMA shall not advocate for substituting the care of a local cardiologist for the care at a CE or HP, but rather advocate that the local cardiologist work in cooperation with the CE or HP to ensure the highest quality of care possible.

HCMA staff, under the direction of the CEO, shall administer the application process including receiving and reviewing applications, verifying data, responding to questions, and informing applicants of results. As needed, and in an annual summary, the CEO shall report on CE designations to the Board and Advisors. Reports shall include periodic updates on CE OR HP applications and designations, communications related to CE OR HPs (e.g. inquiries, on-line discussions, annual meeting presentations, CE OR HP visits and collaborations of CE OR HPs with HCMA, International Summit presentations, etc.). Reports shall identify problems and issues related to use of the CE OR HP designation to ensure consistency and accuracy in use of the CE OR HP designation. Reports shall also address CE OR HP contributions such as improving access to treatment, research, training, CE OR HP collaborations, HCM awareness, and community service. Cautions shall be developed and applied to limit inappropriate uses of the HCMA CE OR HP designation (e.g. to denigrate services in a non-CE OR HP location). The CEO shall establish confidentiality, as appropriate, for CE OR HP information and communicate such policies to CE OR HPs (and CE OR HP applicants) and the HCMA Board.
In the event that a CE OR HP applicant wishes to appeal a decision in the CE OR HP application process, the CEO shall communicate the appeal request to the President of the Board who will arrange a review of the decision by one or more persons not involved in the initial decision. Appeals shall be based on the criteria and application process and decisions shall be final. Information on appeals shall be included in reports.

Should patients, family members, or other interested parties raise concerns about the HCMA's designation of a CE OR HP on such matters as quality of treatment and outcomes, legal disputes, or financial costs, the HCMA shall not address such issues under the association's CE OR HP policy.

The HCMA Board and Advisors, upon review of periodic reports, may revise and extend this policy as necessary including procedures for on-going designation. As appropriate, the Board may authorize collection of fees or expenses associated with the CE OR HP process. The HCMA shall withdraw CE OR HP designation, with appropriate notification, appeals and complaint resolution, if objective analysis indicates that CE OR HP criteria are no longer being met.

HCMA recognized CE's must contain all services needed to care for HCM patients and their families. In the event services are not available at the CE referral procedures are clearly laid out for such services (example: cardiac surgery). In addition it is critical that each program has sufficient institutional support to ensure its success. For more information on how to apply to be an HCMA recognized Center of Excellence please email the HCMA support@4hcm.org

Request more information on becoming an HCMA Center of Excellence

HCM programs performing high volumes of surgeries per year are preferred over programs performing infrequent surgeries. However, some programs refer to centers on a regular basis where high volumes of surgeries are performed, and this is taken into consideration during the evaluation process. The HCMA has conducted at least one site visit at each program and works in partnership with each program to ensure they are working to meet the needs of individuals and families.

Each program needs to be evaluated on its own merits and balanced against the needs of the individual patient or family. The HCMA offers these designations as a guide to assist you in choosing the program that best fits your needs.

The HCMA makes no guarantees about the services rendered within the center or the quality of care each individual will receive. Further, the HCMA does not advocate for substituting the care of a local cardiologist for the care at a Center of Excellence, but rather that your local cardiologist work in cooperation with the Center of Excellence to ensure you are receiving the highest quality of care possible.

At the time the HCMA was founded, HCM care was limited to four or five programs in the US. Today, the HCMA has recognized over 40 HCM Centers of Excellence all across the country.

Learn more about becoming a recognized center of excellence

To be listed as an HCM Center of Excellence, there are basic criteria the center must present to the HCMA to be recognized by the HCMA.

If you are with a medical program that would like to be evaluated for possible addition to this list, please contact the HCMA at 973-983-7429 or click on the link below to schedule an appointment with our COE Coordinator.

Schedule an appointment with Stacey

For Center of Excellence questions or concerns, please reach out to our Center of Excellence Coordinator: Stacey Titus (stacey@4hcm.org)

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HCMA Recognized CENTERs OF EXCELLENCE

HCM - THE DISEASE

FINDING CARE

EDUCATION & SUPPORT

ADVOCACY

C-O-E stands for Center of Excellence, but what is that?

All recognized Centers have been evaluated by the HCMA in the following areas:

Learn more about becoming a recognized center of excellence