MyLymeData: My Data, My Trust

LymeDisease.org was founded 30 years ago as a non-profit 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.

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 committed to involving patients in the research process as partners

Patient engagement is a process of involving patients in the research process as partners, not 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.

Data is used solely for the benefit of patients and the community

In MyLymeData, we protect 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, LymeDisease.org generally works in partnership with researchers using data from the registry.

Our review criteria for proposed MyLymeData research studies includes:

• Does the research reflect patient research priorities?
• Will the project be of value to people in the Lyme community?
• Is the project in partnership or collaboration with LymeDisease.org?
• Does the project reflect real life?
• Are the research design and methodology rigorous and unbiased?
• Is the project feasible? Are the resource demands on LymeDisease.org practical? Does the researcher have the resources necessary to conduct the research?
• Are patient confidentiality and data security concerns addressed?

Patient data is not sold for profit or shared with commercial parties

Some big data projects sell data to third parties like pharma or insurers. We do not. Our commitment is to make sure that patient data is used for the benefit of patients — period. Put simply, this means that patient registry data is only used for research — it is not sold for profit or shared with commercial parties like pharma or insurers.

If you are a patient who is not enrolled in MyLymeData,  please enroll today. If you are a researcher who wants to collaborate with us, please contact me directly.

The MyLymeData Viz Blog is written by Lorraine Johnson, JD, MBA, who is the Chief Executive Officer of LymeDisease.org. You can contact her at lbjohnson@lymedisease.org. On Twitter, follow her @lymepolicywonk.