LA Kelley Communications, Inc. respects the privacy of the patients and families of patients with bleeding disorders who subscribe to its free publications and services.
Patients and families choose to register with LA Kelley Communications to receive newsletters, books and services that educate, empower, and enhance quality of life. They register through the company website, through patient mailings and advertisements, at patient meetings, and by making unsolicited requests through the mail. LA Kelley Communications often has direct access to names, addresses, diagnoses, and many other demographic variables. Since 2004, LA Kelley Communications has recorded the means by which patients register with us.
If HTCs, nonprofits or for-profit companies attempt to register a patient or family with LA Kelley Communications, the request is returned to the sender. The sender is told to ask the patient and/or family to register directly with LA Kelley Communications.
Under no circumstance is information about patient or caregiver subscribers shared with third parties without the patients’ or caregivers’ express permission. A brief patient privacy notice appears on page two of the Parent Empowerment Newsletter (PEN). This policy has been in effect since 1990.
The Patient Privacy Policy in Operation
Newsletters.Four times per year LA Kelley Communications publishes PEN, a periodical for families and patients with bleeding disorders. LA Kelley Communications maintains the database daily on its premises, and uses a professional fulfillment company to print addresses directly on the newsletters to be mailed. No other party is allowed to see the mailing list.
Direct Mail. At least six times per year, LA Kelley Communications distributes direct mail to its mailing list of patients and families that may contain information and opportunities from pharmaceutical companies or specialty pharmacies. Recipients are always reminded in a personal letter from the president to take care when contacting any company, and when releasing their personal medical or contact information to third parties. A professional fulfillment company prints addresses from LA Kelley Communications’ database on the direct mail envelopes. The fulfillment company provides written proof that it has destroyed the LA Kelley mailing list at its facility each time it fulfills a mailing.
Solicitation for Surveys or Focus Groups.
LA Kelley Communications may permit use of its mailing list beyond the six direct mailings for special targeted mailings to a portion of its list. These mailings may solicit participation in surveys or focus groups, which may require patients to divulge personal information. Clients sponsoring such surveys or focus groups, and accessing direct mail services from LA Kelley Communications, are required to sign an agreement that protects patient information. If the client requires families to directly contact the client or a third party employed by the client, the client agrees 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 the patient information obtained initially from LA Kelley Communications will be considered a breach of contract and ethics. Patients and families will be advised that they may share their contact information, but not to expect future mailings from the client directly unless the client contracts again with LA Kelley Communications.
The mailing list is not available for sale, although LA Kelley Communications does require a fee for all direct mailings. For further protection of privacy, companies who contract for a direct mail may not use a company envelope, and may not use their own fulfillment company. Occasionally, direct emails will be sent to patients and families. These are blinded so that recipients cannot see each other’s email addresses.
