Jessica McKeil   |   May 30, 2019

Cannabis and the Fight for Patient Data

Despite little federally sanctioned research, technology allows patients and physicians to contribute to a growing knowledge base of cannabis usage.
Jessica McKeil is a freelance writer focused on the medical marijuana industry, from production methods to medicinal applications. She personally found relief through cannabis for the treatment of her panic and anxiety disorder. She is lucky…

In the timely words of Carly Fiorina, the Former CEO of HP, "The goal is to turn data into information, and information into insight." These sentiments ring true throughout the cannabis industry, where despite widespread use among the public there is still a lack of clinical patient data leading to slowed cannabis tech innovations. Insight, thus far, is pulled from preliminary research or case studies. It’s rarely from big cannabis data sets, and rarely from real-time use.

The sector needs data to connect the dots between patients and their medical conditions. Canada and Israel, regions with big research budgets, are helping - but the outcomes are still years away from use in the public realm. Patients aren't waiting years; they want information and cannabis technology now.  From seed to sale, there is massive potential for growth and development, if only there were enough cannabis data to build off.

In this information vacuum, the private sector is stepping up. Very clearly, patient-driven data pulled from real-time cannabis use is highly valuable for all key players. From the licensed producers cultivating the product to the dispensaries stocking it, to the patients using it, and more - everyone can benefit from knowing how the plant works, through what methods, and for what conditions. Researchers, nonprofits, healthcare providers, and patients all can benefit from the collection of patient data.

The drive for data has spawned a series of patient-targeted collection devices, as well as innovative provider-targeted tools. The data pulled from the sessions of real patients has already lead to the publication of several studies exploring medicinal cannabinoid use. It's still relatively early, but this data may prove just as valuable to the business side of the equation as it does to the patient side.

Here's a quick tour of the cannabis data-collection tools available today.

Observational Research Registry (The Realm of Caring)

Realm of Caring is a 501(c)(3) nonprofit located in Colorado Springs, Colorado. They operate the Observational Research Registry (ORR), which connects funnels patient-entered information into an online portal for eventual analysis. The information gleaned from the ORR feeds back into patient care through educational programs and access to a Care Team Support program.

While perhaps not the sleekest patient interfaces out there today, the Realm of Caring benefits from already having a network of over 55,000 clients and 1,300 healthcare providers around the world. The initial target of the ORR was to collect information about the use of CBD for patients with epilepsy.

This collection led to the publication of "Health Outcome Comparisons Between Epilepsy Patients Who Use Versus Don't Use Cannabinoid Products," in a partnership with John Hopkins School of Medicine.

Now, The Realm of Care has expanded its focus to most conditions, including cancer, autoimmune disorders, neurological disorders, neuropsychiatric disorders, behavioral disorders, and chronic pain. Their portal also services practitioners seeking knowledge about the legalities and successful applications of cannabinoid therapy.

ArFinn Med

ArFinn is the only cannabis data collection tool designed with the physician and healthcare provider in mind. While medicinal cannabis continues to grow in popularity, from a physician's perspective - the data hasn't kept up with popular use. Now, there are several new patient-focused data collection tools, but none explicitly supports the needs of the physicians.

According to James West, ArFinn Founder, "I was speaking to doctors who were having great success treating PTSD, but they weren't connecting with their peers. Despite seeing a humongous upside to cannabis, physicians weren't connecting with the experts, or they felt uncomfortable with it."

ArFinn seeks to fill this knowledge gap, and give providers the ability to share valuable data they have gleaned from their own practice. The app generates a myriad of reports, including medical records services, the efficacy of treatment, cannabis profiles, and dosages.

StrainPrint

As an app designed "For Patients, By Patients," StrainPrint takes more of a direct approach towards medicinal cannabis data collection. A user-friendly mobile application allows patients to input session history and notes. A typical session begins with input on up to four symptoms, the severity of those symptoms, strain selection, method of ingestion followed by dosage.

At the time of writing its database contained all available strains from the licensed producers in Canada, which adds a control which seems to be lacking in other applications. Because strain point sticks with licensed producers and regulated products, it controls for accuracy and cannabinoid content.

StrainPrint pulls data from real-time patient sessions intending to improve patient experience; it also is transforming this data into B2B tools. They are targeting a range of players who could benefit from data analysis, including licensed producers, pharmacists, providers, retailers all B2B targets, and now researchers

ReleafApp

Another mobile application, and one with the best brand awareness to date. ReleafApp has an easy to use interface and smooth user experience. It tracks various session inputs, which immediately translate into valuable information for the patient. Patients input symptoms, severity level, dose size, and general feeling. The platform digests these inputs into invaluable feedback and medical history. Again, like StrainPrint, Releaf is building a wealth of knowledge which not only helps the patient but is of immense value for dispensaries, researchers, and healthcare providers.

To date, the cannabis data collected from Releaf since their launch in 2016 has led to two publications "Patient-Reported Symptom Relief Following Medical Cannabis Consumption," and "Effectiveness of Raw, Natural Medical Cannabis Flower for Treating Insomnia under Naturalistic Conditions," respectively.

As a new consumer market, cannabis naturally contains so many unknowns. Additionally, as a (formerly) strictly controlled substance, any research has been slow and restricted. In this void of information, patient data collection tools like those listed above help all players from patients to producers advance cannabis as medicine. With bigger data sets, come better insights, and smarter cannabis technology developments.

 

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