MyLymeData: My Data, My Trust MyLymeData data is only used for research, never sold for profit.

By Lorraine Johnson, JD, MBA

L was founded 30 years ago as a nonprofit, grassroots organization grounded in the principles of patient empowerment, participation, and self-determination. Our patient registry project, MyLymeData, is part of this grassroots effort to amplify patients’ collective voices in patient-led research.

MyLymeData Is Patient-Led Research

The registry was created by patients, is run by patients and addresses issues that Lyme patients care about.  The registry’s principal investigator had persistent Lyme disease and is recognized as an expert in patient registries and patient engagement. She recently published a book chapter on this topic, entitled “Patient Engagement: Patient Centered Research” and has served as a patient representative for the Lyme community, for the Patient Centered Outcomes Research Institute, and as a subject matter expert on patient registries, generally.

MyLymeData was created by patients, is run by patients, and addresses issues that Lyme patients care about.

Persistent Lyme patients were involved in designing the registry and beta-testing the questions. We have also gone out to the community to ask about top research priorities; privacy, stigma and data use considerations; registry feedback; the qualities required for meaningful patient representation, the National Institute of Health strategic plan, and treatment guidelines. We use the responses to large scale surveys on these issues to ensure that we understand and can promote community interests effectively. We also use them to amplify the patient voice with health care policy.

MyLymeData Is Committed to Involving Patients in the Research Process as Partners

Patient engagement is the process of involving patients in the research process as partners, not as research subjects or participants, to ensure patient-centeredness. Patient-driven registries and research platforms run by patient advocacy organizations—like MyLymeData—represent the most advanced form of patient involvement in research.

MyLymeData Is Committed to Involving Patients in the Research Process as Partners

Data Is Used Solely for the Benefit of Patients and the Community

MyLymeData protects patient data as a trusted community-based-data steward to ensure that data is used solely for the benefit of patients and the community. We vet researchers and their projects to make sure that they align with patient interests. To ensure that studies are successful and will benefit the Lyme patient community, generally works in partnership with researchers using data from the registry.

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