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Editorial
Informatics and e-health: advancing knowledge and improving cancer care V.E. KNOTT, BA, HONS PSYCH, PHD, RESEARCH FELLOW, Epidemiology & Health Systems Division, Menzies School of Health Research, Brisbane, Australia, & D. WELLER, MBBS(ADEL), MPH, PHD, FRACGP, FRCGP, FAFPHM, FRCP(EDIN), JAMES MACKENZIE PROFESSOR OF GENERAL PRACTICE, University of Edinburgh, Edinburgh, and CHAIR, Cancer and Primary Care Research International Network (Ca-PRI), Edinburgh, UK KNOTT V.E. & WELLER D. (2014) European Journal of Cancer Care 23, 713–715 Informatics and e-health: advancing knowledge and improving cancer care
Keywords: e-health, informatics, tele-health, telematics for health, tele-medicine.
We are pleased to share with EJCC readers the collection of papers on e-health and informatics in our themed section – we hope it gives our readers an idea of the extraordinary breadth of work in this area. The papers take a range of interdisciplinary approaches to examine the potential impact of e-health and informatics in cancer control. In its simplest form ‘e-health’ means the transfer of healthcare by electronic means. The World Health Organization (WHO 2014) applies a composite term ‘telematics for health’ to refer to ‘any health-related activities carried out over distance by means of information communication technologies’. This definition includes activities related to tele-medicine (for example the use of telecommunications to treat disease) and telehealth, which is a broader term and refers to the use of telecommunications for health surveillance, management, health promotion, and to access literature and medical knowledge (WHO 2014). The field of health informatics sits at the intersection of information, computer science, social and behavioural science and healthcare. There has been considerable debate over the definition of ‘informatics’ as applied to health (see Bernstam et al. 2010). Due to the need to specify core competencies required in the field of biomediCorrespondence address: Vikki E. Knott, Epidemiology & Health Systems Division, Menzies School of Health Research, PO Box 10639, Brisbane, QLD 4000, Australia (e-mail: [email protected]).
Accepted 1 October 2014 DOI: 10.1111/ecc.12268 European Journal of Cancer Care, 2014, 23, 713–715
© 2014 John Wiley & Sons Ltd
cal informatics, a recent white paper developed by the American Medical Informatics Association proposes a useful ‘working’ definition. Key features of this definition include a focus on the use of scientific inquiry (data and information) across levels (molecular through population health) to inform decision making to improve human health (Kulikowski et al. 2012). The application of health informatics in health has led to immense growth in cancer intelligence in many countries. Through the creation of large datasets, often at a population level, informatics has enabled the interrogation and linkage of datasets to address a range of key questions about the quality and delivery of cancer prevention and management activities. PAPERS IN THE THEMED SECTION Whop et al. (2014) examine the issue of cervical screening amongst Indigenous Australian women. To assess the effectiveness of screening initiatives, we need high quality information systems, which allow recruitment and follow-up to be conducted in a systematic way. These authors discuss the importance of including Indigenous status in cancer registries for the purposes of assessing the uptake of cancer screening in this population. They also note the need for reliable data with regard to other indices, including hospital utilisation and comorbidities. Good cancer intelligence with robust registries and potential to link datasets should become the norm if we are to take a measured and careful approach to cancer control. David Roder and colleagues explore these issues and highlight some of the barriers around releasing data (Roder et al. 2014). The authors are critical of the lack of
KNOTT & WELLER
progress being achieved, and emphasise the importance of appropriate, balanced privacy and ethical mechanisms. They make a plea for improved evidence for cancer service administration and policy development to ensure we are making the best use of data we have available to us. The ‘best practice’ guide to data access they refer to, being developed by the National Health and Medical Research Council, points to a sensible way forward in moderating the effect of multiple ethical approval processes. The explosion of health information available on the web has highlighted important socio-cultural issues in terms of access. Goodall et al. (2014) emphasise the importance of avoiding disparities of access and ensuring that people from culturally and linguistically diverse backgrounds are not disadvantaged through a lack of access to health information. An interesting methodological approach involving grounded theory and a social network analysis highlights how older immigrants, who have ‘aged in place’, access health information. Tele-medicine has the potential to address shortfalls in cancer services in rural and remote regions. Its use, however, is variable around the world, and the limits and boundaries of new technologies need to be appreciated. The readiness of health professionals to embrace these new technologies, coupled with the need for technical training and organisational support have been noted previously (see Schwarz et al. 2014), and are again highlighted in two papers in this issue. Alanee et al. (2014) have used the example of renal cancer in rural areas of Illinois to demonstrate how tele-medicine can address gaps in service provision. The paper emphasises the importance of thinking well beyond the technology itself and designing systems which meet the plethora of patient need and which complement the existing health service environment. Tele-medicine has significant promise in chronic disease management, and it is important that the development of this technology is informed by experience and evidence. Sabesan and Kelly (2014) further explore the issue of tele-medicine (or ‘tele-oncology’) and argue that development of these models should not be left to the discretion of individual clinicians but, rather, form a core and coherent part of healthcare policy. Recent visitors to regions such as South Asia and East Africa would be impressed by the level of mobile phone usage. Whilst more traditional information infrastructure is often lacking in poor and developing countries, the level of mobile phone usage has prompted researchers and healthcare workers to examine the concept of m-health. Holeman et al. (2014) argue that m-health technologies have been used to target a range of healthcare conditions
714
in low resource settings, and it is now time that we invested more in exploring their potential in cancer control. The concept is appealing; mobile phones can be used to transmit information about symptom awareness, the importance of cancer screening, scheduling of cancer and treatment appointments. What is really needed now is a high-quality demonstration project in these regions to more fully explore workable models. So, once again an eclectic mix of papers and by no means a comprehensive coverage of the e-health and informatics landscape. Nevertheless, there are some themes running through these papers which need emphasising. First in many areas we are not limited by available technologies but, rather, other factors such as behaviour change, system constraints and privacy concerns act as barriers in advancing knowledge in cancer control. We are just beginning to see the potential of well integrated high quality cancer intelligence systems, a point emphasised in the accompanying editorial by Rashbass and Peake (2014). The acquisition and utilisation of high quality cancer data can underpin cancer control strategies in both developed and resource poor countries – it is critical that providers of cancer services, policy makers and researchers rise to the very significant challenge of developing and using these data to maximum effect. We are also reminded in these commentaries that, no matter how well developed our e-health and informatics systems, human factors remain paramount and nothing can replace therapeutic relationships in cancer care. As described by Johnson et al. (2014), clinicians also need support through technologies in order to manage the ever exploding evidence base that underpins their decision making. E-health and informatics offer us the opportunity of making better healthcare decisions, informed by evidence in the context of caring therapeutic relationships. Further with this rush to embrace new technologies, it is important to emphasise that access to information is not equally distributed in the population – indeed inequalities in information access can worsen healthcare disparities, and we need to ensure that everyone in the population is included as best as possible. Finally we must not forget that the majority of cancer burden is in developing countries and to ensure that strategies such as m-health, which can readily be delivered in these settings, receive sufficient investment and research activity. We hope you enjoy this first in our series of supplements, along with the other papers in our journal and, as usual, we welcome comments and feedback.
© 2014 John Wiley & Sons Ltd
Informatics & e-health
REFERENCES Alanee S., Dynda D., Levault K., Mueller G., Sadowski D., Wilber A., Jenkins W.D. & Dynda M. (2014) Delivering kidney cancer care in rural Central and Southern Illinois: a telemedicine approach. European Journal of Cancer Care 23, 739–744. Bernstam E.V., Smith J.W. & Johnson T.R. (2010) What is informatics? Journal of Biomedical Informatics 43, 104–110. Goodall K.T., Newman L.A. & Ward P.R. (2014) Improving access to health information for older migrants by using grounded theory and social network analysis to understand their information behaviour and digital technology use. European Journal of Cancer Care 23, 728–738. Holeman I., Evans J., Kane D., Grant L., Pagliari C. & Weller D. (2014) Mobile health for cancer in low to middle income countries: priorities for research and development. European Journal of Cancer Care 23, 750–756.
© 2014 John Wiley & Sons Ltd
Johnson C., Rushton S., Tieman J., Currow D. & Aranda S. (2014) Reclaiming the midnight hours: up-to-date evidence in just one click. European Journal of Cancer Care 23, 760–761. Kulikowski C.A., Shortliffe E.H., Currie L.M., Elkin P.L., Hunter L.E., Johnson T.R., Kalet I.J., Lenert L.A., Musen M.A., Ozbolt J.G., Smith J.W., Tarczy-Hornoch P.Z. & Williamson J.J. (2012) AMIA Board white paper: definition of biomedical informatics and specification of core competencies for graduate education in the discipline. Journal of the American Medical Informatics Association 19, 931–938. doi: 10.1136/amiajnl-2012001053 Rashbass J. & Peake M. (2014) The evolution of cancer registration. European Journal of Cancer Care 23, 757–759. Roder D.M., Fong K.M., Brown M.P., Zalcberg J. & Wainwright C.E. (2014) Realising opportunities for evidencebased cancer service delivery and research: linking cancer registry and
administrative data in Australia. European Journal of Cancer Care 23, 721–727. Sabesan S. & Kelly J. (2014) Are teleoncology models merely about avoiding long distance travel for patients? European Journal of Cancer Care 23, 745–749. Schwarz F., Ward J. & Willcock S. (2014) E-health readiness in outback communities: an exploratory study. Rural and Remote Health 14, 2871. World Health Organization (WHO) (2014) E-Health. Available at: http://www.who .int/trade/glossary/story021/en (accessed 18 September 2014). Whop L.J., Cunningham J. & Condon J.R. (2014) How well is the National Cervical Screening Program performing for Indigenous Australian women? Why we don’t really know, and what we can and should do about it. European Journal of Cancer Care 23, 716–720.
715
Copyright of European Journal of Cancer Care is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
Editorial
Informatics and e-health: advancing knowledge and improving cancer care V.E. KNOTT, BA, HONS PSYCH, PHD, RESEARCH FELLOW, Epidemiology & Health Systems Division, Menzies School of Health Research, Brisbane, Australia, & D. WELLER, MBBS(ADEL), MPH, PHD, FRACGP, FRCGP, FAFPHM, FRCP(EDIN), JAMES MACKENZIE PROFESSOR OF GENERAL PRACTICE, University of Edinburgh, Edinburgh, and CHAIR, Cancer and Primary Care Research International Network (Ca-PRI), Edinburgh, UK KNOTT V.E. & WELLER D. (2014) European Journal of Cancer Care 23, 713–715 Informatics and e-health: advancing knowledge and improving cancer care
Keywords: e-health, informatics, tele-health, telematics for health, tele-medicine.
We are pleased to share with EJCC readers the collection of papers on e-health and informatics in our themed section – we hope it gives our readers an idea of the extraordinary breadth of work in this area. The papers take a range of interdisciplinary approaches to examine the potential impact of e-health and informatics in cancer control. In its simplest form ‘e-health’ means the transfer of healthcare by electronic means. The World Health Organization (WHO 2014) applies a composite term ‘telematics for health’ to refer to ‘any health-related activities carried out over distance by means of information communication technologies’. This definition includes activities related to tele-medicine (for example the use of telecommunications to treat disease) and telehealth, which is a broader term and refers to the use of telecommunications for health surveillance, management, health promotion, and to access literature and medical knowledge (WHO 2014). The field of health informatics sits at the intersection of information, computer science, social and behavioural science and healthcare. There has been considerable debate over the definition of ‘informatics’ as applied to health (see Bernstam et al. 2010). Due to the need to specify core competencies required in the field of biomediCorrespondence address: Vikki E. Knott, Epidemiology & Health Systems Division, Menzies School of Health Research, PO Box 10639, Brisbane, QLD 4000, Australia (e-mail: [email protected]).
Accepted 1 October 2014 DOI: 10.1111/ecc.12268 European Journal of Cancer Care, 2014, 23, 713–715
© 2014 John Wiley & Sons Ltd
cal informatics, a recent white paper developed by the American Medical Informatics Association proposes a useful ‘working’ definition. Key features of this definition include a focus on the use of scientific inquiry (data and information) across levels (molecular through population health) to inform decision making to improve human health (Kulikowski et al. 2012). The application of health informatics in health has led to immense growth in cancer intelligence in many countries. Through the creation of large datasets, often at a population level, informatics has enabled the interrogation and linkage of datasets to address a range of key questions about the quality and delivery of cancer prevention and management activities. PAPERS IN THE THEMED SECTION Whop et al. (2014) examine the issue of cervical screening amongst Indigenous Australian women. To assess the effectiveness of screening initiatives, we need high quality information systems, which allow recruitment and follow-up to be conducted in a systematic way. These authors discuss the importance of including Indigenous status in cancer registries for the purposes of assessing the uptake of cancer screening in this population. They also note the need for reliable data with regard to other indices, including hospital utilisation and comorbidities. Good cancer intelligence with robust registries and potential to link datasets should become the norm if we are to take a measured and careful approach to cancer control. David Roder and colleagues explore these issues and highlight some of the barriers around releasing data (Roder et al. 2014). The authors are critical of the lack of
KNOTT & WELLER
progress being achieved, and emphasise the importance of appropriate, balanced privacy and ethical mechanisms. They make a plea for improved evidence for cancer service administration and policy development to ensure we are making the best use of data we have available to us. The ‘best practice’ guide to data access they refer to, being developed by the National Health and Medical Research Council, points to a sensible way forward in moderating the effect of multiple ethical approval processes. The explosion of health information available on the web has highlighted important socio-cultural issues in terms of access. Goodall et al. (2014) emphasise the importance of avoiding disparities of access and ensuring that people from culturally and linguistically diverse backgrounds are not disadvantaged through a lack of access to health information. An interesting methodological approach involving grounded theory and a social network analysis highlights how older immigrants, who have ‘aged in place’, access health information. Tele-medicine has the potential to address shortfalls in cancer services in rural and remote regions. Its use, however, is variable around the world, and the limits and boundaries of new technologies need to be appreciated. The readiness of health professionals to embrace these new technologies, coupled with the need for technical training and organisational support have been noted previously (see Schwarz et al. 2014), and are again highlighted in two papers in this issue. Alanee et al. (2014) have used the example of renal cancer in rural areas of Illinois to demonstrate how tele-medicine can address gaps in service provision. The paper emphasises the importance of thinking well beyond the technology itself and designing systems which meet the plethora of patient need and which complement the existing health service environment. Tele-medicine has significant promise in chronic disease management, and it is important that the development of this technology is informed by experience and evidence. Sabesan and Kelly (2014) further explore the issue of tele-medicine (or ‘tele-oncology’) and argue that development of these models should not be left to the discretion of individual clinicians but, rather, form a core and coherent part of healthcare policy. Recent visitors to regions such as South Asia and East Africa would be impressed by the level of mobile phone usage. Whilst more traditional information infrastructure is often lacking in poor and developing countries, the level of mobile phone usage has prompted researchers and healthcare workers to examine the concept of m-health. Holeman et al. (2014) argue that m-health technologies have been used to target a range of healthcare conditions
714
in low resource settings, and it is now time that we invested more in exploring their potential in cancer control. The concept is appealing; mobile phones can be used to transmit information about symptom awareness, the importance of cancer screening, scheduling of cancer and treatment appointments. What is really needed now is a high-quality demonstration project in these regions to more fully explore workable models. So, once again an eclectic mix of papers and by no means a comprehensive coverage of the e-health and informatics landscape. Nevertheless, there are some themes running through these papers which need emphasising. First in many areas we are not limited by available technologies but, rather, other factors such as behaviour change, system constraints and privacy concerns act as barriers in advancing knowledge in cancer control. We are just beginning to see the potential of well integrated high quality cancer intelligence systems, a point emphasised in the accompanying editorial by Rashbass and Peake (2014). The acquisition and utilisation of high quality cancer data can underpin cancer control strategies in both developed and resource poor countries – it is critical that providers of cancer services, policy makers and researchers rise to the very significant challenge of developing and using these data to maximum effect. We are also reminded in these commentaries that, no matter how well developed our e-health and informatics systems, human factors remain paramount and nothing can replace therapeutic relationships in cancer care. As described by Johnson et al. (2014), clinicians also need support through technologies in order to manage the ever exploding evidence base that underpins their decision making. E-health and informatics offer us the opportunity of making better healthcare decisions, informed by evidence in the context of caring therapeutic relationships. Further with this rush to embrace new technologies, it is important to emphasise that access to information is not equally distributed in the population – indeed inequalities in information access can worsen healthcare disparities, and we need to ensure that everyone in the population is included as best as possible. Finally we must not forget that the majority of cancer burden is in developing countries and to ensure that strategies such as m-health, which can readily be delivered in these settings, receive sufficient investment and research activity. We hope you enjoy this first in our series of supplements, along with the other papers in our journal and, as usual, we welcome comments and feedback.
© 2014 John Wiley & Sons Ltd
Informatics & e-health
REFERENCES Alanee S., Dynda D., Levault K., Mueller G., Sadowski D., Wilber A., Jenkins W.D. & Dynda M. (2014) Delivering kidney cancer care in rural Central and Southern Illinois: a telemedicine approach. European Journal of Cancer Care 23, 739–744. Bernstam E.V., Smith J.W. & Johnson T.R. (2010) What is informatics? Journal of Biomedical Informatics 43, 104–110. Goodall K.T., Newman L.A. & Ward P.R. (2014) Improving access to health information for older migrants by using grounded theory and social network analysis to understand their information behaviour and digital technology use. European Journal of Cancer Care 23, 728–738. Holeman I., Evans J., Kane D., Grant L., Pagliari C. & Weller D. (2014) Mobile health for cancer in low to middle income countries: priorities for research and development. European Journal of Cancer Care 23, 750–756.
© 2014 John Wiley & Sons Ltd
Johnson C., Rushton S., Tieman J., Currow D. & Aranda S. (2014) Reclaiming the midnight hours: up-to-date evidence in just one click. European Journal of Cancer Care 23, 760–761. Kulikowski C.A., Shortliffe E.H., Currie L.M., Elkin P.L., Hunter L.E., Johnson T.R., Kalet I.J., Lenert L.A., Musen M.A., Ozbolt J.G., Smith J.W., Tarczy-Hornoch P.Z. & Williamson J.J. (2012) AMIA Board white paper: definition of biomedical informatics and specification of core competencies for graduate education in the discipline. Journal of the American Medical Informatics Association 19, 931–938. doi: 10.1136/amiajnl-2012001053 Rashbass J. & Peake M. (2014) The evolution of cancer registration. European Journal of Cancer Care 23, 757–759. Roder D.M., Fong K.M., Brown M.P., Zalcberg J. & Wainwright C.E. (2014) Realising opportunities for evidencebased cancer service delivery and research: linking cancer registry and
administrative data in Australia. European Journal of Cancer Care 23, 721–727. Sabesan S. & Kelly J. (2014) Are teleoncology models merely about avoiding long distance travel for patients? European Journal of Cancer Care 23, 745–749. Schwarz F., Ward J. & Willcock S. (2014) E-health readiness in outback communities: an exploratory study. Rural and Remote Health 14, 2871. World Health Organization (WHO) (2014) E-Health. Available at: http://www.who .int/trade/glossary/story021/en (accessed 18 September 2014). Whop L.J., Cunningham J. & Condon J.R. (2014) How well is the National Cervical Screening Program performing for Indigenous Australian women? Why we don’t really know, and what we can and should do about it. European Journal of Cancer Care 23, 716–720.
715
Copyright of European Journal of Cancer Care is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use.
