TELL YOUR TELEHEALTH TALE QUESTIONNAIRE
Please share your experiences with telehealth/telemedicine so Haystack Project can better advocate on your behalf. Our goal is to advocate for the maintenance of appropriate telehealth flexibilities after the COVID Public Health Emergency (PHE).

Haystack Project is a coalition of more than 90 rare and ultra-rare patient organizations that presents a unified voice on the need to address systemic value and access barriers that impact health care for low prevalence conditions.

Rare and ultra-rare patients have long fought with insurance to see their medical experts and specialty treatment centers because those experts/centers are often out-of-state or outside of the patient’s health plan network. The COVID-19 PHE forced health plans to be more flexible and allow people to see their regular doctors and specialists ‘virtually’ through telehealth, including physicians outside their usual health plan networks. In this questionnaire, we will call these “COVID flexibilities.”

As Congress considers which flexibilities to keep long term (after the PHE is over), Haystack wants to hear about your telehealth/telemedicine experience so we can advocate and educate members of Congress about which flexibilities are important to you.

Please complete this questionnaire to help us better understand what worked and what did not work for you with regards to telemedicine during the PHE.

As you complete the questionnaire, please answer all questions for yourself (as the person with a rare condition) OR on behalf of a person with a rare condition.


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What rare disease do you or the person with the rare condition have? *
If you are completing this questionnaire on behalf of a person with a rare condition, what is your relationship to the individual? *
Required
What is the age of the person with the rare condition in years? *
In what state does the person with the rare condition live? *
What kind of health insurance does the person with the rare condition have? Please choose all that apply: *
Required
BEFORE THE COVID PHE
Before COVID, was there difficulty seeing a doctor (example: a specialist) out-of-state because insurance DENIED coverage for this out-of-state medical care? *
Before COVID, was there difficulty seeing a doctor (example: a specialist) out-of-state due to high cost (example: insurance covered part but not all of the out-of-state visit)? *
Before COVID, was there difficulty seeing a doctor (example: a specialist) out-of-network because insurance denied coverage for this out-of-network medical care? *
Before COVID, was there difficulty seeing a doctor (example: a specialist) out-of-network due to high cost (example: insurance covered part but not all of the out-of-network visit)? *
Before COVID, did your insurance or the rare patient's insurance allow at-home infusions/injections (instead of taking place at a hospital setting or doctor’s office)? *
DURING THE COVID PHE (since March 2020)
During the COVID-19 pandemic, the person with the rare condition used (or is currently using) a telemedicine format (phone call or videoconferencing) with a healthcare provider. *
If your answer to the previous question was "No" please specify why telehealth/telemedicine was not used (examples: a telehealth option was not available, telehealth was not recommended by my healthcare provider, self-administer medications at home, utilize a concierge medical practice, utilize an at-home medical service, etc.). WHEN FINISHED, PLEASE SUBMIT THE FORM NOW.
During the COVID PHE, did you or the person with the rare condition have difficulty scheduling a telehealth appointment?
Clear selection
If you answered "Yes" to the previous question, please explain what happened.
If you or the person with the rare condition used videoconferencing for a telehealth visit, did you experience internet connection problems?
Clear selection
During the telehealth visit(s), did the healthcare provider spend enough time with you or the person with the rare condition?
Clear selection
During the telehealth visit(s), did you or the person with the rare condition feel that your healthcare concerns were adequately addressed?
Clear selection
If you answered "No" to the previous question, please explain what happened.
Did the rare patient feel comfortable sharing personal and sensitive medical information through the telehealth format?
Clear selection
Did the rare patient “leave” the telehealth appointment with clear instructions as to next steps (example: referral for imaging and/or laboratory tests, prescription(s) to be obtained, etc.)
Clear selection
If you answered "No" to the previous question, please explain what happened.
Was it difficult for you or the person with the rare condition to use and/or maneuver the camera on your device to share images of health concerns?
Clear selection
If the answer to the previous question was "yes" was the difficulty due to the patient's mobility?
Clear selection
During the COVID-19 PHE, telehealth has helped address my health care needs or the needs of the person with the rare condition.
Disagree
Agree
Clear selection
PLEASE PROVIDE DETAIL TO HELP US UNDERSTAND YOUR ANSWER TO THE PREVIOUS QUESTION. For example: what worked (such as visits for a refill request, follow-up, acute health issue, wellness check, etc.) and what did not work or was missing (such as provider could not assess certain health parameters like blood pressure).
Did the rare patient have co-pays/out-of-pocket expenses for the telehealth visits, and were they more expensive that what would be paid for in-person visits?
Clear selection
Did your insurance or the insurance of the person with the rare condition allow telehealth visits with out-of-state/out-of-network doctors during COVID?
Clear selection
If you answered "Yes" to the previous question, what kind of out-of-state/out-of-network health providers did the rare patient see? Please choose all that apply:
If the rare patient had out-of-state/out-of-network telehealth visits covered by insurance, what was the reason for the out-of-state/out-of-network telehealth visit? Please choose all that apply:
If the rare patient had out-of-state/out-of-network telehealth visits covered by insurance, did insurance make this process EASY or DIFFICULT for you? PLEASE EXPLAIN.
Did the patient provide the clinician with information on their health either before the telemedicine visit or between visits
Please provide any additional information regarding your answer to the previous question
During the COVID PHE, did you or the person with the rare condition pick up medication prescribed by an out-of-state/out-of-network doctor at a pharmacy?  
Clear selection
If "Yes", did the rare patient's insurance pay for an out-of-state pharmacy?
Clear selection
During the COVID PHE, did the rare patient receive an infusion or injection at home?
Clear selection
If "Yes", did insurance make this relatively EASY or DIFFICULT? PLEASE EXPLAIN.
AFTER THE COVID PHE 
Provided telemedicine/telehealth options are available after the PHE, how likely is it that you or the person with the rare condition will use telemedicine AFTER the COVID PHE?
Not at all likely
Extremely Likely
Clear selection
Please explain your answer to the previous question.
Has the rare patient and their out-of-state/out-of-network doctor discussed being able to continue seeing them AFTER the COVID flexibilities expire?
Clear selection
How likely is it that the rare patient will request telehealth appointments with an out-of- state/out-of-network doctor after the COVID PHE?
Not at all Likely
Extremely Likely
Clear selection
Please explain your answer to the previous question.
Is there anything else you or the person with the rare condition would like to share about your telehealth experience in general? 
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