Using Crowdsourcing Processes for Health Care Research and Health Care Service: Potential Privacy and Data Protection Concerns

Over the past few years, the process of ‘crowdsourcing’ has become really well known to the interdisciplinary research and service community. Like others, health professionals are also using crowdsourcing process as a faster alternative to traditional methods for predicting and monitoring infectious disease outbreaks. Sometimes health researchers use crowdsourcing processes for different medical research, to develop new remedies for diseases or doctors seek help from same group of colleagues to solve a particular medical or health problem for patients.

In Haiti in 2010, informal sources like groups discussions in social media including facebook and twitter revealed a cholera outbreak’s in the country two weeks before the health ministry issued its report on the cholera situation [1]. An important online platform- the ‘Grand Round Table’ is being used to find possible help for health problem from a secure, intimate group of colleagues. In this platform physicians can post difficult cases to seek help and sometimes, it is being used for diagnosis and medical treatment. A modern health-treatment system, Medical Transcription -a   process where written records and notes are translated into an electronic form, entered into a database, and used in the wider-spread arena of documenting the occurrence and frequency of  specific illnesses, is fully based on the crowdsourcing process. In this process medical transcriptionists can be trained at home and online, and, ultimately, perform the work on a more cost-effective basis [2]. A mobile-based crowdsourcing platform, ‘MedAfrica[3] is a Medical Services Content Platform (MSCP) that seeks to create health awareness among citizens from the comfort of their mobile phones. This extraordinary mobile system seeks to increase interactions and purposeful engagements between health practitioners and common people of their services [3]. However, in mobile-based crowdsourcing health service platforms, the biggest privacy concern with the use of cell phones in healthcare is lost or stolen phones that contain unencrypted patient data [4]. Thus, for several reasons, the World Bank has identified that the ‘Privacy and security concerns’ is one of ‘the most relevant challenges to the greater uptake of mobile-based health service [3]’.

The emergence of ICTs, some platforms including social media networks and other web 2.0 tools make users really confusing to distinguish between what is ‘public’ and what is ‘private’ [5]. In the context of using crowdsourcing for health research and health service, contributors need to share confidential, sensitive and personal information. In crowdsourcing process, all data received from contributors store on a centralized server and ‘storing the preference information on a centralized server can expose the users to security and privacy breaches, and in any case requires a great deal of trust’ [6]. Despite the potential use of mobile or web based crowdsourcing platform for health and diseases related issues, experts say they worry about the added risks of security breaches, privacy violations and other concerns that come with the increasing use crowdsourcing process. Along with privacy and security risks, the issue of data protection is also very important in crowdsourcing initiatives for health service and health care research. Users in crowdsourcing efforts for pharmaceutical research need to be aware of some challenges like tissue handling [7], handling information of patients with rare or infectious diseases etc. and they should try to raise those challenges before becoming the user in crowdsourcing.

With this background, the question we should ask, how to address the issue of privacy and data protection in crowdsourcing process using for health service sector?

I believe we have to handle this smartly. Making proper laws to secure privacy and data protection of health information could be the first option. We have give emphasis on developing something like international policy framework / guidelines to secure health data.

Secondly, the research community should give more attention on finding ways to use ‘Privacy Enhancing Technologies’ (PET) and ‘Security Enhancing Technologies’ (SET) on electronic devices, and / communications networks those are being used for crowdsourcing process in health care sector. This type of technology should be made available for all countries.

Reference:

1. Chunara, R., Andrews, J R., John, S.: Social and News Media Enable Estimation of Epidemiological Patterns Early in the 2010 Haitian Cholera Outbreak, The American Society of Tropical Medicine and Hygiene, pp. 39–45. Doi: 10.4269/ajtmh.2012.11-0597 (2012)

2. Strohmeyer, K.: Not alone in a crowd: Crowdsourcing for healthcare. (2013) Cited at http://blog.level3.com/healthcare/not-alone-in-a-crowd-crowdsourcing-for-healthcare/. Accessed on 08/11/2013

3. World Bank. 2012. Information and Communications for Development 2012: Maximizing Mobile. Washington, DC: World Bank. DOI: 10.1596/978-0-8213-8991-1; http://www.worldbank.org/ict/IC4D2012. License: Creative Commons Attribution CC BY 3.0. pp 48-50, 84

4. Gallagher, L.: Experts: mHealth poses privacy challenge  accessed on 11/11/13 from http://www.himsswire.com/article/privacy_security/experts_mhealth_poses_privacy_challenge  (2013)

5. Omand, D. et al.: A balance between security and privacy online must be struck, in: http://www.demos.co.uk/files/_Intelligence_-_web.pdf?1335197327. (2012)

6. Toch, E.: Crowdsourcing privacy preferences in context-aware applications. Springer-Verlag London; DOI: 10.1007/s00779-012-0632-0 (2012)

7. Van, V EB.: Obstacles to European research projects with data and tissue: solutions and further challenges. Eur J Cancer; 44:1438–50 (2008)

Important link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3376509/

 

 

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