Open Prospective Longitudinal Study

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I’ve been reading Triumphs of Experience and really coming to appreciate the value of prospective longitudinal studies. I’ll write a review of the book after I finish it (and I might finish as early as tonight). The limitations of this study are well known to researchers but despite those limitations the study has incredible value. Imagine the value of a study that didn’t have those limitations.

A Preliminary Idea

This morning the thought struck me that thorough journals that many people keep would provide much valuable information of this same type if it were readily available to researchers. After that I realized that with the advent of blogs and social media profiles similar information would be available from living people as well. Of course it didn’t take more than a minute to also catalog the deficiencies of such data sources. For one thing, the data would be inconsistent because each person maintaining a journal or social media profile would choose to include different things in their record depending on their personal tastes and foci. Additionally the social media profiles would suffer from the frequent massaging that happens with personal information that people put out publicly.

While there is nothing that can be done about historical journals and while limitations on the candor of study participants will always be part of any study that relies on participant responses rather than exclusively using hard, verifiable data it is possible to mitigate these limitations to produce a valuable source of research data that would expand upon the limitations of the Harvard Grant Study.

A Meta Study Proposal

To mitigate the limitations of just gathering data that people share online while still benefiting from a much larger and more diverse group of participants, a prospective longitudinal study could be conducted with open access for participation where interested people could join the study by providing a baseline of statistical information (name, birth date, family status, current educational attainment, etc.) when they wish to join the study in exchange for a participation token – some kind of study identifier which allows them to verify their identities when they submit subsequent information to the study.

With current technology study participants could be given access to apps or plugins as appropriate to receive followup questionnaires at regular intervals and submit their responses as well as any other information they wish to voluntarily contribute in a secure and verified way digitally either by integrating their participation token with existing blogs or social profiles, or by providing a way to respond online through a web app or an app on their mobile devices. For the same $270K/year that was spent on the Grant Study researchers could have a baseline of consistent information (meaning answers to the same questions) on a cohort hundreds or even thousands of times the size of the cohort in the Grant Study. That information would lack the individual interviews  roughly every 15 years that augmented the questionnaires on the Grant Study and certainly it wouldn’t be feasible to conduct individual interviews on a diverse cohort of the size that this could grow to.

Researchers with specific questions could have the opportunity to invite participants who meet whatever requirements they deem valuable to their specific research to participate in more detailed followup activities such as accessing medical records or face to face interviews. Those researchers would have access to all the previously submitted information by those participants and the specific data that they collect on their chosen subgroup would be saved in the study so that it would be available for later researchers to build upon.

The potential value of such a project is immense. I guarantee that at least one PhD degree could be awarded on the basis of this project alone in addition to multiple careers worth of research and publications.