Personal Health, Person-centred Health and Personalised Medicine – Concepts, Consumers, Confusion and Challenges in the Informatics World

Summary

Objectives

To define and assess ‘Consumer Health Informatics’ and related emergent issues in an era of new media and of personalisation of care, and from this to define what actions need to be taken to optimise benefits and address risks.

Methods

Definition of key concepts; review of health personalisation, emergent health information and communication technologies and knowledge sources available to citizens and social media; and identification of unresolved issues threatening optimal use of each.

Results

A structured review supported by citations and examples.

Conclusions

Several new aspects of consumer health informatics are emerging, including new knowledge sources, feedback on treatments and care providers, on-line videos, and a new generation of patient experience sites including those which are for profit and seek to influence treatment paradigms. Not just the information usage, but also the potential social challenges and malicious abuses, are global issues, and also transcend the traditional health community and thus should be addressed in partnership with other global agencies.

Keywords

Consumer health informatics - personal health - personalised medicine - Internet - social media - safety

 

• References

• 1 Compact Oxford English Dictionary. Oxford: Oxford University Press; 3rd. edition. 2005
• 2 World Health Organisation. Constitution of the World Health Organization, in Basic Documents, Forty-fifth edition, Supplement, October 2006. WHO; Geneva:
• 3 Geissbuhler A, Kulikowski C. Personal Health Informatics. Editorial. Yearb Med Inform 2012; 2-3.
• 4 Rigby M, Hill P, Koch S, Keeling D. Social Care Informatics as an Essential Part of Holistic Health Care: A Call for Action. Int J Med Inform 2011; 80: 544-54.
• 5 United States General Accounting Off ice. Consumer health informatics: emerging issues. Washington, DC: US Government Printing Office; 1996. (No T-AIMD-96-134).
• 6 Hersey JC, Matheson J, Lohr KN. Consumer health informatics and patient decision-making. Rockville, MD: Agency for Health Care Policy and Research; 1997. (AHCPR research report No 98-N001).
• 7 Eysenbach G. Consumer Health Informatics. BMJ 2000; 320: 1713.
• 8 http://www.imia-medinfo.org/new2/node/137 (accessed 18 January 2012)
• 9 Alpay L, Verhoef J, Xie B, Te’eni D, Zwetsloot-Schonk JH. Current Challenge in Consumer Health Informatics: Bridging the Gap between Access to Information and Information Understanding. Biomed Inform Insights 2009; Jan 1; 02 (01) 1-10.
• 10 McDaniel AM, Schutte DL, Keller LO. Nursing Outlook. 2008; Sep-Oct; 56 (05) 216-223 e3. Review..
• 11 http://www.patientslikeme.com/ (Accessed 20 April 2012)
• 12 ec.europa.eu/information_society/newsroom/cf/fiche-dae.cfm?action_id=233&pillar_id=49&action=Action%2075%3A%20Give%20Europeans%20secure%20online%20access%20to%20their%20medical%20health%20data
• 13 https://www.sundhed.dk/
• 14 Rigby MJ, Robins SC. Human Values as the Core Focus of Community Health Computing. In Barahona P, Veloso M, Bryant J. Proceedings of the Twelfth International Congress of the European Federation of Medical Informatics, Lisbon, Portugal, 22-26 May 1994. Portuguese Association for Medical Informatics; Lisbon: 1994
• 15 Fierz W. Challenge of personalized health care: to what extent is medicine already individualized and what are the future trends?. Med Sci Monit 2004; May; 10 (05) RA111-23 Epub 2004 Apr 28..
• 16 Morton T, Morgan M. Examining how personalised care planning can help patients with long-term conditions. Nursing Times 2009; Sep 22-28; 105 (37) 13-5.
• 17 Mooney M, Barry S, Draper R. The electronic patient record as a guarantor of personalised mental health care. Stud Health Technol Inform 1998; 52 Pt 1: 14-7.
• 18 Bolton D. Conceptualisation of mental disorder and its personal meanings. J Ment Health 2010; Aug; 19 (04) 328-36.
• 19 Crommelin DJ, Storm G, Luijten P. ‘Personalised medicine’ through ‘personalised medicines’: time to integrate advanced, non-invasive imaging approaches and smart drug delivery systems. Int J Pharm 2011; Aug 30; 415 1-2 5-8 Epub 2011 Feb 12
• 20 Romero M. Bioidentical hormone replacement therapy. Customizing care for perimenopausal and menopausal women. Advanced Nurse Practitioner 2002; Nov; 10 (11) 47-8 51-2..
• 21 Kadda A. Social utility of personalised e-health services: the study of home-based healthcare. Int J Electron Healthc 2010; 05 (04) 403-13.
• 22 Kalra D. Health informatics 3.0. Yearb Med Inform 2011; 06 (01) 8-14.
• 23 Hordern A, Georgiou A, Whetton S, Prgomet M. Consumer e-health: an overview of research evidence and implications for future policy. HIM Journal 2011; 40 (02) 6-14.
• 24 Alpay L, van der Boog P, Dumaij A. An empowerment-based approach to developing innovative e-health tools for self-management. Health Informatics J 2011; Dec; 17 (04) 247-55.
• 25 Murugiah K, Vallakati A, Rajput K, Sood A, Challa NR. YouTube as a source of information on cardiopulmonary resuscitation. Resuscitation 2011; Mar; 82 (03) 332-4 Epub 2010 Dec 24..
• 26 Lim MJFat, Doja A, Barrowman N, Sell E. YouTube Videos as a Teaching Tool and Patient Resource for Infantile Spasms. J Child Neurol 2011; Jul; 26 (07) 804-9 Epub 2011 May 6..
• 27 http://www.spiegel.de/international/europe/0,1518,821132,00.html (accessed 14 March 2012)
• 28 Forsström J, Rigby M, Roberts R, Nilssen S-I, Wyatt J, Beier B. et al. Towards Evaluation and Certification of Telematics Services for Health (TEAC-Health) - Key Recommendations (Final Report of the EU Health Telematics Application Programme project HC 4101. Towards European Accreditation and Certification in Health (TEAC-Health). University of Turku; Turku, Finland: 1999
• 29 Forsström J, Rigby M. TEAC-Health – Research-based Recommendations for European Certification of Health Telematics Services. In: Hasman A, Blobel B, Dudeck D, Engelbrecht R, Gell G, Prokosch H-U. Medical Infobahn for Europe: Proceedings of MIE2000 and GMDS2000. Amsterdam: IOS Press; 2000
• 30 Rigby M, Forsström J, Roberts R, Wyatt J. Verifying Quality and Safety in Health Informatics Services. BMJ 2001; 323 7312 552-6.
• 31 http://www.hon.ch (accessed 20 April 2012)
• 32 Laversin S, Baujard V, Gaudinat A, Simonet MA, Boyer C. Improving the transparency of health information found on the internet through the honcode: a comparative study. Stud Health Technol Inform 2011; 169: 654-8.
• 33 Boyer C, Baujard V, Geissbuhler A. Evolution of health web certification through the HONcode experience. Stud Health Technol Inform 2011; 169: 53-7.
• 34 Talmon J, Rigby M, Pelayo S, Ammenwerth E. The Medical Device Directive and Software: The implications. in Moen A, Andersen SK, Aarts J, Hurlen P. editors. 23rd International Conference of the European Federation for Medical Informatics User Centred Networked Health Care, MIE 2011 / CD / Panels
• 35 http://www.oecd.org/sti/smarterhealth (Accessed 20 April 2010)