Crowdsourcing in medical research, How public data is advancing medical science

Crowdsourcing in medical research: How public data is advancing medical science

Medical researchers are doing some of the most critical job in the world and they are committed to making breakthrough discoveries that could benefit everyone. Currently, through advancements in digital communication technology, the public can readily help them in advancing medical science.

Participating in medical research usually requires traveling to a hospital or a research facility to complete a specific task designed to collect data for drawing conclusions. This also means that medical researchers have to recruit a considerable number of participants in order to collect a considerable amount of data. However, digital communication technology is changing this process through crowdsourcing.

Users of computers, smartphones, and other Internet-enabled consumer electronic devices are generating massive amounts of data on a daily basis. In addition, several profit and non-profit organisations have designed digital communication systems for promoting crowdsourcing. For medical researchers, the digital landscape is an enormous data landmine.

Collecting public health data through crowdsourcing

Crowdsourcing is a concept that considers the public as a capital for generating resources. While the idea of crowd capital is hardly new, information and communication technology has nonetheless made it possible to access and enlist a larger number of people to inexpensively achieve a common goal. Thus, by definition, crowdsourcing is the practice of outsourcing the public to tap into their collective contributions using technology.

Success stories and offshoots have emerged from crowdsourcing. Crowdfunding for example has launched several innovative ventures by raising monetary contributions from the public via the Internet. Kickstarter is one the popular crowdfunding websites for entrepreneurs, creative, and inventors. Wikipedia is another example of crowdsourcing that uses open-collaboration to create an online encyclopaedia. Non-profit organisations across the world have used and promoted crowdsourcing to combat migrant abuse or provide charitable services.

Medical researchers are now utilising crowdsourcing to acquire public health data and advance medical science. A literature review involving studies published from 2000 to 2001 and an informal interview conducted from 2008 to 2011 by Melanie Swan revealed that participatory health initiatives through crowdsourcing have become a part of the public health ecosystem and they are expanding the scope of medicine from a traditional treatment approach to a personalised preventive approach. Crowdsourcing public health data provides an almost instant process for testing and applying medical findings.

But there are more to crowdsourcing than data collection. A literature review conducted by Benjamin L. Ranard et al revealed that several medical researchers have utilised crowdsourcing for surveillance or monitoring, surveying, problem solving, or data processing in their respective studies. The review concluded that crowdsourcing is highly valuable for reducing the cost and improving the quality and speed of research because it engages large segments of the public while also opening the possibilities for novel discoveries.

There are several technology-based avenues for crowdsourcing in medical research. The review of Swan listed web-based technologies, smartphone health applications, and health social networks as popular mediums for engaging the public or collecting public health data. Gunther Eysenbach introduced the term Medicine 2.0 to describe the use of web-based technologies and services including Web 2.0 and its derivatives to enable and facilitate social networking, participation, apomediation, openness, and collaboration.

Developments in the Internet have created a suitable environment for crowdsourcing in medical research according to Eysenbach. For instance, the compatibility between separate software applications via open web standards has improved multiplatform collaboration and communication. The emergence of social networking and social media, in addition, have revolutionized the way people communicate, collaborate, identify potential collaborators or members of the network, and determine relevant information and content. Several Web 2.0 technologies have also allowed responsiveness and real-time interactivity of websites, thus improving user experience.

Based from the aforementioned, crowdsourcing in the field of medical science is a technology-dependent approach for pursuing medical research projects. Using a specific or a variety of IT applications, crowdsourcing can effectively and inexpensively assist medical researchers collect public health data, process or analyse collected data, or solve problems and research issues, among others.

Examples of crowdsourcing in medical research projects

There are several notable applications of crowdsourcing in medical research. The PersonalGenomes.org is a non-profit organisation founded at Harvard Medical School in 2005. Its flagship Personal Genome Project aims to generate, aggregate, and interpret human biological trait data on an unprecedented scale. Through its website, the organisation allows individuals to share their genome sequence and health data for the use of medical researchers around the world.

The same people behind PersonalGenomes.org have expanded the crowdsourcing of public health data through Open Humans, a side initiative with a specific goal of expanding existing medical databases and making health data available to medical researchers to speed up research projects centred on understanding diseases and development of treatments. Apart from the Personal Genome Project, the Open Humans have also launched the American Gut and GoViral projects that respectively involve collecting data about gut microbiome and viral specimens for flu or flulike symptoms.

Researchers from the Perelman School of Medicine at the University of Pennsylvania used crowdsourcing in a study to pinpoint and record the locations of about 1,400 lifesaving automated external defibrillators (AEDs) in public places in Philadelphia. They also utilised crowdsourcing to perform a literature search, particularly by using Yahoo! Answers and Quora. These two free websites helped them locate and review 21 health-related literatures.

Several technology companies have also unveiled projects that use crowdsourcing to advance medical science. For example, multinational technology company Apple Inc. launched its open source software framework called ResearchKit that allows medical researchers to create apps that would turn users of Apple products into medical research participants.

Apple takes advantage of the fact that there are hundreds of millions of people around the world who own an iPhone or iPad. These devices are equipped with powerful processors and sophisticated sensors that could track and record data pertaining to movements, measurements, and volunteered inputs, therefore making them a valuable tool in medical research. With the sheer number of probable participants, medical researchers can use ResearchKit to collect data on a massive scale.

Several medical institutions around the world are using ResearchKit. They have already deployed apps for collecting health data needed to study asthma, Parkinson’s disease, diabetes, breast cancer, and cardiovascular disease.

In promoting the use of technology to advance cancer research, multinational semiconductor company Intel Corporation featured the case of Bryce Olson, an Intel employee diagnosed with stage four metastatic prostate cancer in 2014 at the age of 45.

Olson had his tumour analysed by the Knight Cancer Institute at the Oregon Health & Science. Accordingly, every case of cancer is unique and most people with the disease have no idea what specific genetic mutations are actually fuelling their unique cancer growth. Through genomic sequencing or DNA analysis, patients can receive personalised treatment and precision care.

Intel has been working with the Knight Cancer Institute at the Oregon Health & Science University since 2013 to speed up and lower the cost of genomic sequencing or DNA analysis using high-performance computing and cloud computing technology.

Take note that each genomic sequencing for an individual generates information for 30,000 genes that is worth terabytes of computer data. Analysing these data into meaningful and actionable results is both time consuming and very expensive. The collaboration between Intel and OHSU is making the entire process cost and time efficient.

Intel believes cancer institutions around the world should embrace their technology. The more health data that can be analysed and compared, the more effective these institutions can speed up research relating to cancer treatment or provide personalised treatment and precision care for cancer patients. It is interesting to note that the standardisation of genomic sequencing for cancer patients would create a database that could help individuals and healthcare providers record and determine cancer cases that are similar at the genetic level. This is helpful in comparative studies and trials, as well as in understanding what treatments has worked for a person with a somewhat similar type of cancer.

Advantages of using crowdsourcing in medical research

Medical researchers need data. Using conventional research methodologies is considerably unworkable because of the associated costs and time constraints. Furthermore, these methodologies generate infrequent and limited amount and representation of data. There is strength in numbers in the field of medical research. Through crowdsourcing, amassing data can be time and cost effective.

Crowdsourcing can also allow medical researchers to focus on a particular research phase by using crowd capital to collect data or resources, process or analyse data, or solve problems or research issues.

The availability of technologies related to IT and digital communication accelerates the research process. For instance, a smartphone app can make remote and frequent data collection possible. Web-based and cloud computing technologies also create an avenue for individuals or researchers from around the world to easily share data and access a database.

In a nutshell, the obvious benefit of crowdsourcing centres on reducing labour and expenses while maximising productivity and creativity or access to resources through the collective contributions of the public. In medical research and medical science, this translates into easy, immediate, and extensive access to probable research participants and data, as well as resources needed to complete research projects.

Further details of the study of Swan are in the article “Crowdsourced Health Research Studies: An Important Emerging Complement to Clinical Trials in the Public Health Research Ecosystem” published in the Journal of Medical Internet Research. Details of the study of Ranard et al are in the article “Crowdsourcing—Harnessing the Masses to Advance Health and Medicine, a Systematic Review” published in the Journal of General Internal Medicine. Details of the study of Eysenbach are in the article “Medicine 2.0: Social Networking, Collaboration, Participation, Apomediation, and Openness” published in the Journal of Medical Internet Research.

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