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Wicks P.,PatientsLikeMe Inc. | Chiauzzi E.,PatientsLikeMe Inc.
BMC Medicine | Year: 2015

Mobile health apps are health and wellness programs available on mobile devices such as smartphones or tablets. In three systematic assessments published in BMC Medicine, Huckvale and colleagues demonstrate that widely available health apps meant to help patients calculate their appropriate insulin dosage, educate themselves about asthma, or perform other important functions are methodologically weak. Insulin dose calculators lacked user input validation and made inappropriate dose recommendations, with a lack of documentation throughout. Since 2011, asthma apps have become more interactive, but have not improved in quality; peak flow calculators have the same issues as the insulin calculators. A review of the accredited National Health Service Health Apps Library found poor and inconsistent implementation of privacy and security, with 28 % of apps lacking a privacy policy and one even transmitting personally identifying data the policy claimed would be anonymous. Ensuring patient safety might require a new approach, whether that be a consumer education program at one extreme or government regulation at the other. App store owners could ensure transparency of algorithms (whiteboxing), data sharing, and data quality. While a proper balance must be struck between innovation and caution, patient safety must be paramount. © 2015 Wicks and Chiauzzi.


Our objective was to propose a testable hypothesis arising from the recent finding of a low index-to-ring finger ratio (2D:4D ratio) in ALS. The 2D:4D ratio finding suggests that prenatal testosterone exposure may play a role in the development of the disease. Research from other fields is presented to suggest that healthy individuals with low 2D:4D ratio have enhanced sporting prowess, particularly with regard to activities requiring endurance and dependent upon slow-twitch muscles. Although studies are of varying quality, some epidemiological findings in ALS also suggest enhanced sporting prowess, as well as a higher risk of developing the disease among members of certain physically active professions. If the 2D:4D finding survives replication then this might explain the reported elevated risk of ALS among professional athletes, the military, and manual professions. Such a relationship might also explain why ALS patients were more likely to have been elite sportspeople in younger life. This hypothesis may serve as a starting point for debate and discussion over the nature of ALS risk factors, as well as generating a number of specific testable hypotheses that may yield insight into the genesis of the disease. © 2012 Informa Healthcare.


Wicks P.,PatientsLikeMe Inc. | Vaughan T.E.,PatientsLikeMe Inc. | Massagli M.P.,PatientsLikeMe Inc. | Heywood J.,PatientsLikeMe Inc.
Nature Biotechnology | Year: 2011

Patients with serious diseases may experiment with drugs that have not received regulatory approval. Online patient communities structured around quantitative outcome data have the potential to provide an observational environment to monitor such drug usage and its consequences. Here we describe an analysis of data reported on the website PatientsLikeMe by patients with amyotrophic lateral sclerosis (ALS) who experimented with lithium carbonate treatment. To reduce potential bias owing to lack of randomization, we developed an algorithm to match 149 treated patients to multiple controls (447 total) based on the progression of their disease course. At 12 months after treatment, we found no effect of lithium on disease progression. Although observational studies using unblinded data are not a substitute for double-blind randomized control trials, this study reached the same conclusion as subsequent randomized trials, suggesting that data reported by patients over the internet may be useful for accelerating clinical discovery and evaluating the effectiveness of drugs already in use.


In this video Q&A, we talk to Paul Wicks about the emergence of participant-led research, and discuss how this field may be expected to develop in the near future, particularly with regard to personalized medicine. © 2014 Wicks; licensee BioMed Central Ltd.


The invention can be directed toward a method for personalized management and comparison of medical condition and outcome based on patient profiles of a community of patients. The method can include the steps of providing a database of patient profiles, providing a user interface for inputting a query of the database from a user, generating a query result including one or more matching patient profiles from the database, and displaying the query result as a correlation medical condition parameters of the user with a medical outcome.


Various aspects of the invention described herein provide systems and methods for context-linked importation of user information. One aspect of the invention provides a method for context-linked importation of user information. The method includes: providing an interactive environment that allows posting of content by a plurality of pre-identified users; receiving content for the interactive environment from a pre-identified user; selecting relevant data about the pre-identified user from a database, the relevant data selected based on information contained in the content; and displaying the relevant data along with the content on the interactive environment.


The invention can be directed toward a method for personalized management and comparison of medical condition and outcome based on patient profiles of a community of patients. The method can include the steps of providing a database of patient profiles, providing a user interface for inputting a query of the database from a user, generating a query result including one or more matching patient profiles from the database, and displaying the query result as a correlation medical condition parameters of the user with a medical outcome.


Various aspects of the invention described herein provide systems and methods for context-linked importation of user information. One aspect of the invention provides a method for context-linked importation of user information. The method includes: providing an interactive environment that allows posting of content by a plurality of pre-identified users; receiving content for the interactive environment from a pre-identified user; selecting relevant data about the pre-identified user from a database, the relevant data selected based on information contained in the content; and displaying the relevant data along with the content on the interactive environment.


The invention relates to systems and methods for behavioral modification of users in an online community where users store or share data to help one another reach informed decisions. One aspect of the invention provides a method for encouraging active participation in an online community. The method includes: receiving information from a first user regarding a topic, receiving a request from a second user for additional information desired from the first user, and sending a personalized message to the first user requesting the additional information. Another aspect of the invention provides a computer-readable medium whose contents cause a computer to perform a method for encouraging active participation in an online community. The method includes: receiving information from a first user regarding a topic; identifying additional information desired from the first user; and sending a personalized message to the first user requesting the additional information.


Patent
PatientsLikeMe Inc. | Date: 2015-11-25

The invention provides a system and a method for tracking, assessing, and managing personalized data related to medical conditions, diseases, disease symptoms, treatments, body function metrics, health and well-being, education, and training. In one embodiment, a method for personalized management of a medical condition is provided. The method includes providing a graphical user interface for allowing the patient to input at least one medical condition metric and at least one intervention, receiving at least one medical condition metric for a patient for a time interval, receiving information about at least one intervention for the patient for the time interval, and displaying the at least one medical condition metric and intervention over the time interval.

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