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Becoming a Patient-Teacher

If you/your family member has/have a confirmed diagnosis of a genetic metabolic disorder and want to participate in the National Patient-Teacher Registry, please click here to submit your info online (non-secure) or you may download the forms to the right, fill out, and fax into 866-744-5665 (secure).

Following are typical questions that may arise:

What is the purpose of the Patient-Teacher Registry Project?

We want to educate the medical and greater health community about metabolic diseases so more health professionals can play a role in the diagnosis and management of these disorders. We believe that education has a significant part to play in addressing the workforce shortage in Genetics.

We at VMP Genetics are committed to education in many forms, and we recognize the incredible power of patient storytelling as a compelling way of informing clinicians and students. The impact of the patient experience is more personal and penetrating than anything a lecturer can deliver, which creates long-lasting impressions about rare diseases.

How does the teaching occur?

We are planning to facilitate teaching opportunities in which patients and family members participate in live, in-person presentations at medical schools and hospitals, or through pre-recorded videos downloaded into a lecture hall or auditorium.

How do doctors or educators find the speakers?

VMP Genetics will establish an online registry, listing only the diagnosis and information about the geographical location (city/town/state/province) of all patient-teachers. No personal information about the speakers will be visible to the public on the registry website.

A doctor or educator who wishes to have a patient-teacher come to her/his classroom will be able to access the registry and find out for which diagnoses speakers are available in that locality.

What is the process for arranging a patient/family member to speak at a medical school or hospital?

A physician or educator will select a diagnosis in his/her location from the registry, and submit a speaker request form to VMP Genetics. VMP Genetics will confirm the identity and credibility of the request and educator (e.g., status as a faculty member at a medical school).

After confirmation, VMP Genetics will notify the patient-teacher about the details of the request, and provide the educator’s contact information to the speaker. Patient-teachers then have the option of either accepting the request and reaching out to the educator, or letting VMP Genetics know they are unavailable (VMP Genetics will then notify the requesting educator).

If a problem arises after a presentation is booked, and the speaker cannot attend the session, the speaker should notify the educator ASAP that s/he cannot attend.

What happens at a live presentation?

Each patient-teacher and educator collaboration will have flexibility as to what they’d like to include in their presentation. Typically, the class will have been educated about the disease beforehand, and the patient-teacher then presents her/his story present afterwards. There may also be a brief personal introduction.

The patient presentations usually run between 20 and 40 minutes, and the format of the presentation itself (e.g., informal and off-the-cuff, a slide presentation, etc) is usually left up to the speaker. The session often ends with a question-and-answer period and closing remarks.

There may be a request to film the presentation for the benefit of others who cannot attend the live session. You can decide whether or not you and comfortable with this plan; it is not a requirement.

Are patients/family members paid to speak?

There is usually no payment involved with volunteering as a patient-teacher for a medical school or a medical center. If an honorarium is provided, it is offered by the school or center directly to the speaker. VMP Genetics is not involved in these arrangements and does not offer payment.

Speakers should ask the educator about reimbursement for travel expenses such as gas, parking, or other costs associated with getting to the location, if appropriate.

How is the privacy of patient speakers protected?

The privacy of the patient-teachers is maintained in several ways:

  • The online registry will list only a patient-teacher’s diagnosis (the name of the disease) and her/his geographical location (city/town/state/province/zip or postal code).
  • VMP Genetics will confirm the institutional status of educators/physicians after requests are made and before speakers are contacted.
  • VMP Genetics then provides information about the request to the patient-teachers, not to the requesting physician/educator. Making a connection is the prerogative of the patient-teacher.
  • Speaker information (name, contact information, other personal information) is never released by VMP Genetics to any outside party, organization, or company.

Why is a consent form required?

A consent form ensures that patient-teachers and VMP Genetics are both clear about the operations of the program, what is expected of each party, and how privacy is maintained in the project.

Is there a problem if a speaker has never given such a presentation before?

Not at all! For many, this might be the first opportunity to teach a medical audience! VMP Genetics will be able to provide some guidance about how to prepare such a presentation, what topics might be of interest to the audience, and how to deliver the information effectively, so the experience can be a successful and rewarding one.

What if I have additional questions about the Patient-Teacher Registry Project or my participation in the project?

Please feel free to reach out and ask questions and give comments! And let us know how your teaching experience went! Do to our Contact page to send us a message.

Patient-Teacher Registry Intake Form

Patient-Teacher Registry Intake Online

Patient-Teacher Consent Form