Yearb Med Inform 2012; 21(01): 16-24
DOI: 10.1055/s-0038-1639425
Working Group Contribution
Schattauer GmbH

Self-Tracking, Social Media and Personal Health Records for Patient Empowered Self-Care

Contribution of the IMIA Social Media Working Group
C. Paton
1   National Institute for Health Innovation, University of Auckland, New Zealand
,
M. Hansen
2   School of Nursing and Health Professions, University of San Francisco, California, USA
,
L. Fernandez-Luque
3   Northern Research Institute, Tromsø, Norway
,
A. Y. S. Lau
4   Centre for Health Informatics, Australian Institute of Health Innovation, University of New South Wales, Australia
› Author Affiliations
At the time of writing, Annie Lau was supported by a grant received from the Australian National Health and Medical Research Council (NHMRC) Centre for Research Excellence (1032664). The funding body did not have a role in the design and conduct of the study; the collection, management, analysis, and interpretation of the data; or the preparation, review, or approval of the manuscript.
Further Information

Correspondence to

Chris Paton
National Institute for Health Innovation University of Auckland
New Zealand

Publication History

Publication Date:
10 March 2018 (online)

 

Summary

Objectives

This paper explores the range of self-tracking devices and social media platforms used by the self-tracking community, and examines the implications of widespread adoption of these tools for scientific progress in health informatics.

Methods

A literature review was performed to investigate the use of social media and self-tracking technologies in the health sector. An environmental scan identified a range of products and services which were used to exemplify three levels of self-tracking: self-experimentation, social sharing of data and patient controlled electronic health records.

Results

There appears to be an increase in the use of self-tracking tools, particularly in the health and fitness sector, but also used in the management of chronic diseases. Evidence of efficacy and effectiveness is limited to date, primarily due to the health and fitness focus of current solutions as opposed to their use in disease management.

Conclusions

Several key technologies are converging to produce a trend of increased personal health surveillance and monitoring, social connectedness and sharing, and integration of regional and national health information systems. These trends are enabling new applications of scientific techniques, from personal experimentation to e-epidemiology, as data gathered by individuals are aggregated and shared across increasingly connected healthcare networks. These trends also raise significant new ethical and scientific issues that will need to be addressed, both by health informatics researchers and the communities of self-trackers themselves.


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  • References

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  • 6 Weitzman ER, Adida B, Kelemen S, Mandl KD. Sharing data for public health research by members of an international online diabetes social network. PLoS One 2011; January; 06 (04) e19256.
  • 7 Chan DS, Callahan CW, Hatch-Pigott VB, Lawless A, Proffitt HL, Manning NE. et al. Internet-based home monitoring and education of children with asthma is comparable to ideal office-based care: results of a 1-year asthma in-home monitoring trial. Pediatrics 2007; Mar; 119 (03) 569-78.
  • 8 Jan RL, Wang JY, Huang MC, Tseng SM, Su HJ, Liu LF. An internet-based interactive telemonitoring system for improving childhood asthma outcomes in Taiwan. Telemed J E Health 2007; Jun; 13 (03) 257-68.
  • 9 Newman S, Steed L, Mulligan K. Self-management interventions for chronic illness. Lancet 2004; Oct 23-29; 364 (9444): 1523-37.
  • 10 Rasmussen LM, Phanareth K, Nolte H, Backer V. Internet-based monitoring of asthma: a long-term, randomized clinical study of 300 asthmatic subjects. J Allergy Clin Immunol 2005; Jun; 115 (06) 1137-42.
  • 11 van der Meer V, van Stel HF, Detmar SB, Otten W, Sterk PJ, Sont JK. Internet-based self-management offers an opportunity to achieve better asthma control in adolescents. Chest 2007; Jul; 132 (01) 112-9.
  • 12 Grant RW, Wald JS, Schnipper JL, Gandhi TK, Poon EG, Orav EJ. et al. Practice-linked online personal health records for type 2 diabetes mellitus: a randomized controlled trial. Arch Intern Med 2008; Sep 8; 168 (16) 1776-82.
  • 13 Green BB, Cook AJ, Ralston JD, Fishman PA, Catz SL, Carlson J. et al. Effectiveness of home blood pressure monitoring, Web communication, and pharmacist care on hypertension control: a randomized controlled trial. JAMA 2008; Jun 25; 299 (24) 2857-67.
  • 14 Andrews G, Cuijpers P, Craske MG, McEvoy P, Titov N. Computer therapy for the anxiety and depressive disorders is effective, acceptable and practical health care: a metaanalysis. PLoS One 2010; 05 (10) e13196.
  • 15 Titov N, Andrews G, Schwencke G, Robinson E, Peters L, Spence J. Randomized controlled trial of Internet cognitive behavioural treatment for social phobia with and without motivational enhancement strategies. Aust N Z J Psychiatry 2010; Oct; 44 (10) 938-45.
  • 16 Murray E, Burns J, See TS, Lai R, Nazareth I. Interactive Health Communication Applications for people with chronic disease. Cochrane Database Syst Rev 2005; (04) CD004274.
  • 17 Webb LT, Joseph J, Yardley L, Michie S. Using the Internet to Promote Health Behavior Change: A Systematic Review and Meta-analysis of the Impact of Theoretical Basis, Use of Behavior Change Techniques, and Mode of Delivery on Efficacy. J Med Internet Res 2010; 12 (01) e4.
  • 18 van den Berg MH, Schoones JW, Vliet TPVlieland. Internet-based physical activity interventions: a systematic review of the literature. J Med Internet Res 2007; 09 (03) e26.
  • 19 Balmford J, Borland R, Benda P. Patterns of Use of an Automated Interactive Personalized Coaching Program for Smoking Cessation. J Med Internet Res 2008; December 17; 10 (05) e54.
  • 20 Stevens JV, Funk LK, Brantley JP, Erlinger PT, Myers HV, Champagne MC. et al. Design and Implementation of an Interactive Website to Support Long-Term Maintenance of Weight Loss. J Med Internet Res 2008; January 25; 10 (01) e1.
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  • 25 Wagner PJ, Dias J, Howard S, Kintziger KW, Hudson MF, Seol YH. et al. Personal health records and hypertension control: a randomized trial. J Am Med Inform Assoc. 2012 Jan 10
  • 26 Rosenbloom ST, Daniels TL, Talbot TR, McClain T, Hennes R, Stenner S. et al. Triaging patients at risk of influenza using a patient portal. J Am Med Inform Assoc. 2011 Dec 1
  • 27 Shambroom JR, FÁBregas SE, Johnstone J. Validation of an automated wireless system to monitor sleep in healthy adults. J Sleep Res. 2011 no-no
  • 28 Nitz JC, Kuys S, Isles R, Fu S. Is the Wii Fit™ a new-generation tool for improving balance, health and well-being? A pilot study. Climacteric 2010; 13 (05) 487-91.
  • 29 Sugarman H, Weisel-Eichler A, Burstin A, Brown R. editors Use of the Wii Fit system for the treatment of balance problems in the elderly: A feasibility study. Virtual Rehabilitation International Conference, 2009. 2009. June 29 2009-July 2 2009.
  • 30 Dannecker KL, Petro SA, Melanson EL, Browning RC. Accuracy Of Fitbit Activity Monitor To Predict Energy Expenditure With And Without Classification Of Activities: 725: Board #2 8:00 AM - 10:00 AM. Medicine & Science in Sports & Exercise 2011; 43 (05) 62 10.1249/01.MSS. 0000402857.55729.ab.
  • 31 Montgomery-Downs HE, Insana SP, Bond JA. Movement toward a novel activity monitoring device. Sleep & breathing = Schlaf & Atmung. 2011 October:1-5
  • 32 Kravitz RL, Duan N, Niedzinski EJ, Hay MC, Subramanian SK, Weisner TS. What ever happened to N-of-1 trials? Insiders’ perspectives and a look to the future. The Milbank quarterly 2008; December; 86 (04) 533-55.
  • 33 Guyatt G, Sackett D, Taylor DW, Chong J, Roberts R, Pugsley S. Determining optimal therapy- randomized trials in individual patients. N Engl J Med 1986; April; 314 (14) 889-92.
  • 34 Slick IS. Personalized health experiments to optimize well-being and enable scientif ic discovery. [cited. 2012 17/3/2012]; Available from: http://web.media.mit.edu/∼eslick/ eslick_phd_proposal.pdf
  • 35 Frost JH, Massagli MP. Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another’s data. J Mel Internet Res 2008; January; 10 (03) e15.
  • 36 Merton RK. The self-fulfilling prophecy. Antioch Rev 1948; 08 (02) 193-210.
  • 37 Fernandez-Luque L, Karlsen R, Bonander J. Review of extracting information from the Social Web for health personalization. J Med Internet Res 2011; January; 13 (01) e15.
  • 38 Cottrell GW, Metcalfe J. EMPATH: face, emotion, and gender recognition using holons. 1990; 564-71.
  • 39 Huang Y-P, Goh T, Liew CL. Hunting Suicide Notes in Web 2.0 - Preliminary Findings. Multimedia Workshops, International Symposium on. Los Alamitos. CA, USA: IEEE Computer Society; 2007: 517-21.
  • 40 Pang B, Lee L. Opinion Mining and Sentiment Analysis. Foundations and Trends in Information Retrieval 2008; 02: 1-135.
  • 41 Vinciarelli A, Pantic M, Bourlard H, Pentland A. editors. Social signal processing. Proceeding of the 16th ACM international conference on Multimedia - MM ‘08. 2008. New York, New York, USA: ACM Press.;
  • 42 Frost J, Okun S, Vaughan T, Heywood J, Wicks P. Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe. J Med Internet Res 2011; 13: e6.
  • 43 Moreno MA, Parks MR, Zimmerman FJ, Brito TE, Christakis DA. Display of health risk behaviors on MySpace by adolescents: prevalence and associations. Arch Pediatr Adolesc Med 2009; 163: 27-34.
  • 44 Mishra N. Online Social Networking: Can it Be Used for Risk Behavior Surveillance. AMIA Spring Congress. Phoenix, Arizona. 2008
  • 45 Christensen CM, Grossman JH, Hwang J. The innovator’s prescription: a disruptive solution for health care. McGraw-Hill NewYork: 2009
  • 46 Greenhalgh T, Wood GW, Bratan T, Stramer K, Hinder S. Patients’ attitudes to the summary care record and HealthSpace: qualitative study. BMJ 2008; 336 (7656): 1290-5.
  • 47 Liaw ST, Hannan T. Can we trust the PCEHR not to leak?. Med J Aust 2011; 195 (04) 222.
  • 48 Do NV, Barnhill R, Heermann-Do KA, Salzman KL, Gimbel RW. The military health system’s personal health record pilot with Microsoft HealthVault and Google Health. J Am Med Inform Assoc 2011; 18 (02) 118-24.
  • 49 Classen DC, Bates DW. Finding the meaning in meaningful use. N Engl J Med 2011; 365 (09) 855-8.
  • 50 Health Insurance Portability and Accountability Act of 1996. Pub. L. No. 104-191. 1996
  • 51 FDA. Draft Guidance for Industry and Food and Drug Administration Staff - Mobile Medical Applications. Food and Drug Administration (FDA). U.S. Department of Health and Human Services. 2011 [2012/01/17]; Available from: http://www.fda.gov/MedicalDe vices/ DeviceRegulationandGuidance/ GuidanceDocuments/ucm263280.htm
  • 52 Paisan-Ruiz C, Jain S, Evans EW, Gilks WP, Simon J, van der Brug M. et al. Cloning of the gene containing mutations that cause PARK8-linked Parkinson’s disease. Neuron. 2004 Nov 18; 44(4):595-600

Correspondence to

Chris Paton
National Institute for Health Innovation University of Auckland
New Zealand

  • References

  • 1 Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC. et al. Toward a national framework for the secondary use of health data: an American Medical Informatics Association white paper. J Am Med Inform Assoc 2007; 14 (01) 1-9.
  • 2 Moore GE. Cramming more components onto integrated circuits. Proceedings of the IEEE 1998; 86 (01) 82-5.
  • 3 Swan M. Emerging patient-driven health care models: an examination of health social networks, consumer personalized medicine and quantified selftracking. Intl J Environ Res Public Health 2009; February; 06 (02) 492-525.
  • 4 Fox S. The Social Life of Health Information, 2011. Pew Internet & American Life Project. 2011
  • 5 Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T. et al. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 2010; January; 12 (02) e19.
  • 6 Weitzman ER, Adida B, Kelemen S, Mandl KD. Sharing data for public health research by members of an international online diabetes social network. PLoS One 2011; January; 06 (04) e19256.
  • 7 Chan DS, Callahan CW, Hatch-Pigott VB, Lawless A, Proffitt HL, Manning NE. et al. Internet-based home monitoring and education of children with asthma is comparable to ideal office-based care: results of a 1-year asthma in-home monitoring trial. Pediatrics 2007; Mar; 119 (03) 569-78.
  • 8 Jan RL, Wang JY, Huang MC, Tseng SM, Su HJ, Liu LF. An internet-based interactive telemonitoring system for improving childhood asthma outcomes in Taiwan. Telemed J E Health 2007; Jun; 13 (03) 257-68.
  • 9 Newman S, Steed L, Mulligan K. Self-management interventions for chronic illness. Lancet 2004; Oct 23-29; 364 (9444): 1523-37.
  • 10 Rasmussen LM, Phanareth K, Nolte H, Backer V. Internet-based monitoring of asthma: a long-term, randomized clinical study of 300 asthmatic subjects. J Allergy Clin Immunol 2005; Jun; 115 (06) 1137-42.
  • 11 van der Meer V, van Stel HF, Detmar SB, Otten W, Sterk PJ, Sont JK. Internet-based self-management offers an opportunity to achieve better asthma control in adolescents. Chest 2007; Jul; 132 (01) 112-9.
  • 12 Grant RW, Wald JS, Schnipper JL, Gandhi TK, Poon EG, Orav EJ. et al. Practice-linked online personal health records for type 2 diabetes mellitus: a randomized controlled trial. Arch Intern Med 2008; Sep 8; 168 (16) 1776-82.
  • 13 Green BB, Cook AJ, Ralston JD, Fishman PA, Catz SL, Carlson J. et al. Effectiveness of home blood pressure monitoring, Web communication, and pharmacist care on hypertension control: a randomized controlled trial. JAMA 2008; Jun 25; 299 (24) 2857-67.
  • 14 Andrews G, Cuijpers P, Craske MG, McEvoy P, Titov N. Computer therapy for the anxiety and depressive disorders is effective, acceptable and practical health care: a metaanalysis. PLoS One 2010; 05 (10) e13196.
  • 15 Titov N, Andrews G, Schwencke G, Robinson E, Peters L, Spence J. Randomized controlled trial of Internet cognitive behavioural treatment for social phobia with and without motivational enhancement strategies. Aust N Z J Psychiatry 2010; Oct; 44 (10) 938-45.
  • 16 Murray E, Burns J, See TS, Lai R, Nazareth I. Interactive Health Communication Applications for people with chronic disease. Cochrane Database Syst Rev 2005; (04) CD004274.
  • 17 Webb LT, Joseph J, Yardley L, Michie S. Using the Internet to Promote Health Behavior Change: A Systematic Review and Meta-analysis of the Impact of Theoretical Basis, Use of Behavior Change Techniques, and Mode of Delivery on Efficacy. J Med Internet Res 2010; 12 (01) e4.
  • 18 van den Berg MH, Schoones JW, Vliet TPVlieland. Internet-based physical activity interventions: a systematic review of the literature. J Med Internet Res 2007; 09 (03) e26.
  • 19 Balmford J, Borland R, Benda P. Patterns of Use of an Automated Interactive Personalized Coaching Program for Smoking Cessation. J Med Internet Res 2008; December 17; 10 (05) e54.
  • 20 Stevens JV, Funk LK, Brantley JP, Erlinger PT, Myers HV, Champagne MC. et al. Design and Implementation of an Interactive Website to Support Long-Term Maintenance of Weight Loss. J Med Internet Res 2008; January 25; 10 (01) e1.
  • 21 Wantland DJ, Portillo CJ, Holzemer WL, Slaughter R, McGhee EM. The effectiveness of Web-based vs. non-Web-based interventions: a meta-analysis of behavioral change outcomes. J Med Internet Res 2004; Nov 10; 06 (04) e40.
  • 22 Stinson J, Wilson R, Gill N, Yamada J, Holt J. A Systematic Review of Internet-based SelfManagement Interventions for Youth with Health Conditions. J Pediatr Psychol 2009; 34 (05) 495-510.
  • 23 IOM. Health IT and Patient Safety: Building Safer Systems for Better Care. Washington, DC: Institute of Medicine. The National Academies Press; 2011. [2012/01/17];Available from: http://www.nap.edu/ catalog.php?record_id=13269
  • 24 Lau AYS, Parker A, Early J, Sacks G, Anvari F, Coiera E. Comparative usage of a web-based personally controlled health management system and normal support: a case study in IVF. electronic Journal of Health Informatics (eJHI). 2012 (accepted: 2012/01/24)
  • 25 Wagner PJ, Dias J, Howard S, Kintziger KW, Hudson MF, Seol YH. et al. Personal health records and hypertension control: a randomized trial. J Am Med Inform Assoc. 2012 Jan 10
  • 26 Rosenbloom ST, Daniels TL, Talbot TR, McClain T, Hennes R, Stenner S. et al. Triaging patients at risk of influenza using a patient portal. J Am Med Inform Assoc. 2011 Dec 1
  • 27 Shambroom JR, FÁBregas SE, Johnstone J. Validation of an automated wireless system to monitor sleep in healthy adults. J Sleep Res. 2011 no-no
  • 28 Nitz JC, Kuys S, Isles R, Fu S. Is the Wii Fit™ a new-generation tool for improving balance, health and well-being? A pilot study. Climacteric 2010; 13 (05) 487-91.
  • 29 Sugarman H, Weisel-Eichler A, Burstin A, Brown R. editors Use of the Wii Fit system for the treatment of balance problems in the elderly: A feasibility study. Virtual Rehabilitation International Conference, 2009. 2009. June 29 2009-July 2 2009.
  • 30 Dannecker KL, Petro SA, Melanson EL, Browning RC. Accuracy Of Fitbit Activity Monitor To Predict Energy Expenditure With And Without Classification Of Activities: 725: Board #2 8:00 AM - 10:00 AM. Medicine & Science in Sports & Exercise 2011; 43 (05) 62 10.1249/01.MSS. 0000402857.55729.ab.
  • 31 Montgomery-Downs HE, Insana SP, Bond JA. Movement toward a novel activity monitoring device. Sleep & breathing = Schlaf & Atmung. 2011 October:1-5
  • 32 Kravitz RL, Duan N, Niedzinski EJ, Hay MC, Subramanian SK, Weisner TS. What ever happened to N-of-1 trials? Insiders’ perspectives and a look to the future. The Milbank quarterly 2008; December; 86 (04) 533-55.
  • 33 Guyatt G, Sackett D, Taylor DW, Chong J, Roberts R, Pugsley S. Determining optimal therapy- randomized trials in individual patients. N Engl J Med 1986; April; 314 (14) 889-92.
  • 34 Slick IS. Personalized health experiments to optimize well-being and enable scientif ic discovery. [cited. 2012 17/3/2012]; Available from: http://web.media.mit.edu/∼eslick/ eslick_phd_proposal.pdf
  • 35 Frost JH, Massagli MP. Social uses of personal health information within PatientsLikeMe, an online patient community: what can happen when patients have access to one another’s data. J Mel Internet Res 2008; January; 10 (03) e15.
  • 36 Merton RK. The self-fulfilling prophecy. Antioch Rev 1948; 08 (02) 193-210.
  • 37 Fernandez-Luque L, Karlsen R, Bonander J. Review of extracting information from the Social Web for health personalization. J Med Internet Res 2011; January; 13 (01) e15.
  • 38 Cottrell GW, Metcalfe J. EMPATH: face, emotion, and gender recognition using holons. 1990; 564-71.
  • 39 Huang Y-P, Goh T, Liew CL. Hunting Suicide Notes in Web 2.0 - Preliminary Findings. Multimedia Workshops, International Symposium on. Los Alamitos. CA, USA: IEEE Computer Society; 2007: 517-21.
  • 40 Pang B, Lee L. Opinion Mining and Sentiment Analysis. Foundations and Trends in Information Retrieval 2008; 02: 1-135.
  • 41 Vinciarelli A, Pantic M, Bourlard H, Pentland A. editors. Social signal processing. Proceeding of the 16th ACM international conference on Multimedia - MM ‘08. 2008. New York, New York, USA: ACM Press.;
  • 42 Frost J, Okun S, Vaughan T, Heywood J, Wicks P. Patient-reported outcomes as a source of evidence in off-label prescribing: analysis of data from PatientsLikeMe. J Med Internet Res 2011; 13: e6.
  • 43 Moreno MA, Parks MR, Zimmerman FJ, Brito TE, Christakis DA. Display of health risk behaviors on MySpace by adolescents: prevalence and associations. Arch Pediatr Adolesc Med 2009; 163: 27-34.
  • 44 Mishra N. Online Social Networking: Can it Be Used for Risk Behavior Surveillance. AMIA Spring Congress. Phoenix, Arizona. 2008
  • 45 Christensen CM, Grossman JH, Hwang J. The innovator’s prescription: a disruptive solution for health care. McGraw-Hill NewYork: 2009
  • 46 Greenhalgh T, Wood GW, Bratan T, Stramer K, Hinder S. Patients’ attitudes to the summary care record and HealthSpace: qualitative study. BMJ 2008; 336 (7656): 1290-5.
  • 47 Liaw ST, Hannan T. Can we trust the PCEHR not to leak?. Med J Aust 2011; 195 (04) 222.
  • 48 Do NV, Barnhill R, Heermann-Do KA, Salzman KL, Gimbel RW. The military health system’s personal health record pilot with Microsoft HealthVault and Google Health. J Am Med Inform Assoc 2011; 18 (02) 118-24.
  • 49 Classen DC, Bates DW. Finding the meaning in meaningful use. N Engl J Med 2011; 365 (09) 855-8.
  • 50 Health Insurance Portability and Accountability Act of 1996. Pub. L. No. 104-191. 1996
  • 51 FDA. Draft Guidance for Industry and Food and Drug Administration Staff - Mobile Medical Applications. Food and Drug Administration (FDA). U.S. Department of Health and Human Services. 2011 [2012/01/17]; Available from: http://www.fda.gov/MedicalDe vices/ DeviceRegulationandGuidance/ GuidanceDocuments/ucm263280.htm
  • 52 Paisan-Ruiz C, Jain S, Evans EW, Gilks WP, Simon J, van der Brug M. et al. Cloning of the gene containing mutations that cause PARK8-linked Parkinson’s disease. Neuron. 2004 Nov 18; 44(4):595-600