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Life Sciences 05.08.19 BLOG 

Speaking Their Language: Challenges in Rare Disease Cross-Border Patient Travel

By TransPerfect Life Sciences

doctor holds stethoscope in front of map

Speaking Their Language: Challenges in Rare Disease Cross-Border Patient Travel

With an increase in drug development for rare disease around the world, there’s a greater need for trial patients to travel cross-border for medical care. Whether the patient is an adult who only speaks one language or an infant accompanied by a whole family, traveling to another country where you can’t communicate in your mother tongue introduces stressors even when at your healthiest. Throw in an illness that has yet to be cured, and that stress can intensify.

The chances of patients remaining enrolled for the duration of the trial—and therefore potentially benefitting from the treatment—grow significantly if they receive a certain standard of care both inside and outside the physician’s office. This may include supporting patients and their families as they learn to live (albeit temporarily) in a new country and adapt to a different language and culture.

Here are eight factors to consider when conducting trials with cross-border patients:

  1. Where are the sites located?

    Are the sites in large cities with many cultures represented, or smaller towns with a more homogenous population?

    • Patients relocated to larger cities may need more intense language support at the onset, but the need may diminish over time due to the possible existence of cultural communities within larger cities.
    • Patients in smaller towns tend to require a consistent level of language support. It’s also important to note that language resources are often less plentiful in small cities and towns.
  2. What are the language capabilities of the study sites?

    Is the staff multilingual? Is the site part of a large hospital system and thus more likely to have in-house language services? Sites may be able to handle the language needs of patients in-house for protocol visits for some common languages, but not others.

    What about language needs outside of the site? It’s important to plan for patients’ language needs both in and out of the protocol visits.

  3. What are the language capabilities of your patient travel team?

    Is your team or travel vendor multilingual? Language support may be needed to communicate with the site, patient, or various local service providers (housing, transportation, etc.).

  4. How long is the patient traveling/relocating for?

    This may vary greatly from patient to patient in the same study. Patients relocating for longer intervals generally need more language support, especially outside of protocol visits.

  5. Who is traveling/relocating with the patient?

    Is it only the patient and a caregiver, or is it an entire family (which happens more commonly with pediatric studies)? More travel companions may increase the language support needs.

  6. How much language support will you provide?

    The best way to support the language and cultural needs of cross-border patients and their caregiver(s) is to have a wide array of language services at your disposal:

    • Written translation for both personal and study-related documents. Also consider language support for text messages and emails.
    • Spoken translation (known as interpretation): both in-person and over-the-phone.
  7. When and where will you provide interpretation?

    Will in-person interpretation only be provided at scheduled protocol visits, or will the interpreter be on call for in-person, over-the-phone, or text language support at any time and location? Language support models can range from on demand/first available linguist to custom solutions with dedicated linguists for all aspects of the patient’s and caregiver’s needs.

    Dedicated interpreters, while costly, can be a powerful tool for driving patient satisfaction. The interpreter will be the first to know if a patient is unhappy for any reason (housing, reimbursements, etc.) and is often the only person the patient interacts with (other than caregiver/family) who speaks the patient’s language and understands his or her culture.

  8. What about language needs outside of protocol visits?

    “Life happens” visits, as we call them, are critical to a patient’s and caregiver’s ability to adapt to a new culture and may include:

    • Housing – touring apartments with patients
    • Utilities – getting a mobile phone, learning how to use appliances
    • Acclimation – grocery shopping, public transportation
    • Education – enrollment in schools for pediatric patients or minor family members traveling with adult patients
    • Immigration – ongoing visa requirements for long-term relocation
    • Additional therapies – many rare disease patients require treatments and therapies outside of those provided through the trial and protocol visits

    Coordinating the travel of cross-border patients presents unique challenges. TransPerfect is ready with custom solutions tailored to the needs of each patient. To find out how, contact patienttravel@transperfect.com.

 

 


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