LA Kelley Communications, Inc. respects and maintains the privacy of the patients and families of patients with bleeding disorders who subscribe to or order our free publications and services and agree to be on our mailing list. “Patients” here will refer to adult patients with bleeding disorders, and parents or caretakers of children age 18 and younger with bleeding disorders.
Patients choose to register with LA Kelley Communications when they order our free newsletters, books, and services for families with bleeding disorders. They register through our company website, through patient mailings and advertisements, at patient meetings, by word of mouth, or by making unsolicited requests to us through the mail, email, or by phone.
We only accept patient registration directly through patients themselves. If HTCs, nonprofits, or for-profit companies attempt to register a patient or family with LA Kelley Communications, we return the request to the sender, and we invite the sender to ask the patient and/or family to register directly with LA Kelley Communications.
Collection of Personal Information
LA Kelley Communications collects Personal Information (hereafter referred to as PI), or information that is personally identifiable about patients with bleeding disorders, including but not limited to name, address, email address, phone number, and other non-public information such as diagnoses, birthdates, children’s names, and other demographic variables.
The PI we gather helps us learn about visitors to our company website, our customers and potential customers, and patients and families with bleeding disorders. We use this information to provide free services and products to patients; to better tailor the features, performance, and support of our products and services; and to offer patients additional third-party support, information, and opportunities.
Disclosure of Personal Information
We do mail notices of products and services from third parties, typically pharmaceutical or specialty pharmacy companies, who hire us to share these with patients (see “Direct-to-Consumer Mail” below). The third party promoting these mailings never sees patients’ PI. These third parties enter into a contractual agreement with LA Kelley Communications, and they are aware that they are not allowed to contact patients on our mailing list through our company, nor view registered patients’ contact information or PI.
All patient PI is stored in an electronic database. The LA Kelley Communications patient database has been constructed over 20 years and is not available for sale. Since 2004, LA Kelley Communications has diligently and rigorously recorded the means by which patients register with us and the date when they register with us. We do this in case a patient forgets that he or she did choose to register with us, or in case a patient questions whether he or she voluntarily registered with us. The database is updated daily, and patients are actively contacted if discrepancies appear, so that PI is accurate; this helps prevent unwanted mailings, notices, and educational materials being sent to patients.
We do not intentionally register children under age 18 separately from their parents, caretakers, or legal guardians. We do gather demographic information on children with bleeding disorders only with parental consent.
LA Kelley Communications publishes PEN, a quarterly hardcopy (available in PDF) periodical for families and patients with bleeding disorders. A privacy notice, disclaimer, and contact information are published on page 2 of PEN;additional contact information is published on page 16.
At least six times per year, LA Kelley Communications distributes direct-to-consumer (DTC) mailings to its proprietary mailing list of patients and families. These mailings may contain information about new programs, new products, and opportunities from pharmaceutical companies, specialty pharmacies, or nonprofits. A letter from Laureen Kelley, president of LA Kelley Communications, is sent with the first mailing of each year, detailing why direct mailings are sent, the tentative schedule for mailing, and how to opt out. Recipients are always reminded in this personal letter from the president to take care when contacting any company, such as the DTC mail sponsor, and when releasing their personal medical or contact information. Recipients are also invited to opt out of our DTC mailings by calling or emailing LA Kelley Communications if they no longer want to receive the direct mailings.
LA Kelley Communications receives a fee from the DTC mail sponsor for its direct mailing. For further protection of patients’ privacy, companies that contract for a direct mailing may not use their company envelopes, and may not use their own fulfillment company. All direct mailings are sent in LA Kelley Communications envelopes through our own contracted fulfillment house. Occasionally, direct emails are sent to patients and families. These are blinded so that recipients cannot see each other’s email addresses.
When you register with LA Kelley Communications to receive our free newsletters or books, or to learn more about our company, you expressly consent to the collection of your PI by LA Kelley Communications, and consent to receive direct mailings on behalf of third parties.
Four times per year, LA Kelley Communications emails Communiqué, an HTML file sent via Constant Contact to alert patients, families, and corporations about our new products, services, travels, and events. Recipients can opt out by clicking on the “unsubscribe” button at the bottom of Communiqué.
If patients are interviewed for articles published in PEN, a book, or any other publication, they are required to complete and sign an interview consent form. In most cases, patients are shown their quotations or stories before publication. If a patient’s photo is considered for publication, a signed photo release consent form is also required.
Solicitation for Surveys or Focus Groups.
LA Kelley Communications may permit use of its mailing list beyond the six DTC mailings for special, targeted mailings to a portion of the list. These mailings may solicit patients for participation in in-person or web-based surveys or focus groups, which may require patients to divulge PI. If a patient and/or a patient’s family decides to participate in a third-party survey or focus group, LA Kelley Communications is not responsible for any breach by the third party of that patient or patient’s family’s confidentiality regarding their PI. Although LA Kelley Communications is not responsible for the acts or failures to act by third parties, third parties sponsoring such surveys or focus groups and accessing DTC services from LA Kelley Communications are required to sign an agreement that protects patient PI. If the third party requires patients or families to directly contact the third party or a subsequent third party employed by the initial third party, the third party is required to use this confidential contact information once only for the distribution of funds or paperwork for the specified mailing, and not to use these names in the future. Future use of PI obtained initially from LA Kelley Communications will be considered a breach of contract and ethics. Patients and families will be advised that although they may elect to share their contact information, they should not expect future mailings from the third party directly unless the third party contracts again with LA Kelley Communications for any and each subsequent survey or focus group. LA Kelly Communications IS NOT RESPONSIBLE FOR A BREACH BY A THIRD PARTY OF ITS CONTRACT WITH LA KELLEY COMMUNICATIONS REGARDING ITS OBLIGATION TO PROTECT THE CONFIDENTIAL PERSONALLY IDENTIFIABLE INFORMATION OF THOSE PATIENTS AND/OR PATIENT FAMILIES WHO ELECT TO PARTICIPATE IN A THIRD-PARTY SURVEY OR FOCUS GROUP.
When LA Kelley Communications invites and subsequently selects patients to participate in surveys, to protect patients’ PI, as much and as often as possible LA Kelley Communications will mail honoraria directly to patient participants, rather than allowing the third party that offers and conducts the survey to mail such honoraria.
Choices Regarding Personal Information
If patients receive non-electronic information from us, such as newsletters or DTC, they may write to us, call us, or email us to have their name removed if they no longer want to receive these publications.
Within five (5) business days of receiving their preference, we will remove their name from the list they indicate, such as the DTC list, the Communiqué list, or the PEN mailing list.
Under no circumstance is information about patient subscribers shared directly with third parties without the patients’ express permission. This policy has been in effect since 1990, when the company was founded.
LA Kelley Communications updates its database daily on its premises, and uses a professional, bonded fulfillment company to print addresses directly on the newsletters and envelopes to be mailed. No other party is allowed to see our mailing list. The mailing list is sent encrypted to the fulfillment house. After completing each mailing, the fulfillment house issues a formal letter to inform us that the mailing list received from us has been destroyed.
Although LA Kelley Communications has taken significant steps to ensure that PI is not intercepted, accessed, used, or disclosed by unauthorized persons, LA Kelley Communications cannot fully eliminate security risks associated with PI.
If for any reason, a patient’s PI is compromised, for example, if shared accidentally via email, or if there is unauthorized access, use, or disclosure, the patient will be notified immediately, and the incident will be recorded as a security breach. The accidental recipient of the patient’s PI will be notified and asked to destroy it.
This Privacy Statement is a living document and is subject to occasional amendment.
This Policy was last updated June 2018.