E-patients hold key to the future of healthcare
BMJ 2018; 360 doi: https://doi.org/10.1136/bmj.k846 (Published 26 February 2018) Cite this as: BMJ 2018;360:k846
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It is inevitable that individuals and communities are going to embrace search engines and up to date rapidly advancing background artificial intelligence afforded by Google and other platforms. Healthcare systems and their public and private funders need to embrace this in an informed and structured manner. While not every current patient (or future patient) will want or be able to be an e-patient, it will soon be the norm. In the meantime, one of our biggest challenges, as service providers to all members of society, is to not generate a digital divide and maximise equity of service provision.
The field of health literacy, i.e., the ability to understand, access, retrieve and use health information and health services, provides critical insights into how to go forward (1, 2). To characterise the e-health literate patient, we sought insights from patients and experts in Denmark, England and globally through e-consultation. The following seven domains describe the range of strengths and weaknesses that people may have when attempting to engage in digital health:
1) Ability to process information
2) Engagement in own health
3) Ability to actively engage with digital services
4) Feel safe and in control
5) Motivated to engage with digital services
6) Access to digital services that work
7) Digital services that suit individual needs (3).
Current and future e-patients are going to have diverse patterns of these skills and abilities - as are our health professionals. To advance healthcare and to meet the demands of the modern patient, we need to understand individual user's experiences of current and emerging systems. A new measure of e-health literacy has been developed for this purpose (4). We need to revise and plan health professional training to not just respond to changing technology but to co-lead the development and implementation with patients and technology developers. This will help not only the health professionals to understand how to embrace or include those who are not yet e-patients, but also assist health service organisations to design new care pathways that suit both the emerging e-patient and the evolving e-health professional.
The UK, I hope, is still smarting from the failure to successfully implement using these principles a decade ago (5).
Many patients are ready, many healthcare professionals and their educators are ready - we need a structured approach to embrace the change and ensure no one is left behind.
1. Greenhalgh, T. Health literacy: towards system level solutions. BMJ 2015;350:h1026
2. Batterham RW, Hawkins M, Collins PA, Buchbinder R, Osborne RH. Health literacy: applying current concepts to improve health services and reduce health inequalities. Public Health 2016; 132: 3-12
3. Norgaard O, Furstrand D, Klokker L, Knudsen AK, Batterham R, Kayser L, Osborne RH. The e-health literacy framework (eHLF): a conceptual framework for characterizing e-health users and their interaction with e-health systems. Knowledge Management & E-Learning 2015:7(4)
4. Kayser L, Karnoe A, Furstrand D, Batterham R, Christensen KB, Elsworth G, Osborne RH. The e-Health Literacy Questionnaire (eHLQ): Development and initial validity testing of a multi-dimensional tool based on the e-Health Literacy Framework. Journal of Medical Internet Research 2018;20(2):e36
5. Greenhalgh, T, Hinder, S, Stramer, K, Bratan, T & Russell, J 2010, 'Adoption, non-adoption, and abandonment of a personal electronic health record: Case study of HealthSpace', BMJ (British Medical Journal), vol. 341, no. 11, pp. c5814-c.
Competing interests: No competing interests
Knowledgeable patients who understand the complexities of clinical medicine greatly enhance the quality of their medical management. [1].
But not all patients are able to distinguish sources of reliable information from the ill-informed and sometimes downright fraudulent information on the web. A small minority of patients end up in the hands of charlatans providing so called alternative therapies.[2].
Furthermore , possessing accurate information is not without side effects either. Similar to a placebo/nocebo response, expectations can influence side effects from a treatment.[3]. For example, cancer patients who expect to experience a given side-effect are indeed more likely to experience the side effect. A meta-analysis of the relationship between response expectancies and cancer treatment-related side effects shows the relationship was significantly stronger for pain. [4].
Physicians and E-patients also need to be aware that emotional distress caused by diagnosis of a serious illness such as cancer can influence patient judgement. For instance, men who were more emotionally distressed at diagnosis were found to more likely to choose potentially unnecessary surgery for prostate cancer.[5].
Before triggering the torrent of information at the mere tap of a touch screen, it is worth noting that "sometimes ignorance is bliss".
References
1 Riggare S. E-patients hold key to the future of healthcare. BMJ 2018;360:k846.
2 Murdoch B, Zarzeczny A, Caulfield T. Exploiting science? A systematic analysis of complementary and alternative medicine clinic websites’ marketing of stem cell therapies. BMJ Open 2018;8:e019414. doi:10.1136/bmjopen-2017-019414.
3 Bishop FL, Coghlan B, Geraghty AW, et al. What techniques might be used to harness placebo effects in non-malignant pain? A literature review and survey to develop a taxonomy. BMJ Open 2017;7:e015516. doi:10.1136/bmjopen-2016-015516.
4 Sohl SJ, Schnur JB, Montgomery GH. A meta-analysis of the relationship between response expectancies and cancer treatment-related side effects. J Pain Symptom Manage 2009;38:775–84. doi:10.1016/j.jpainsymman.2009.01.008.
5 Orom H, Underwood W, Biddle C. Emotional Distress Increases the Likelihood of Undergoing Surgery among Men with Localized Prostate Cancer. J Urol 2017;197:350–5. doi:10.1016/j.juro.2016.08.007
Competing interests: No competing interests
Thank you for writing this article. I have uveal melanoma which is a rare disease. I was told very little when I was first diagnosed so naturally being a curious person I went to the internet to find out more.
I want to be in control of my disease and have choices for treatment but often find I am educating others. I want to be seen as part of the team not the person at the end of all the debate and discussion , this is my life not yours.
Of course not everything on the Internet is accurate/ true but a lot of support and knowledge can be gained from arming yourself with information. I am still learning about this disease but so are my doctors, please let us go forward together without suspicion, negativity, fear.
Competing interests: No competing interests
E-patients are the patients using the internet and other technologies as well as fellow patients to diagnose their own problems, and they find the best treatment, continually optimize their treatments, and even fund and conduct research [1]. It sounds good but is it time to be E-patients?
First, we must have strict technical standards. The construction of information platform should conform to the technology standard, so as to ensure data safety and quality.
More importantly, telemedicine management norms should conform to all medical management regulations and systems.
I regretfully feel it is too early to embrace the era of E-patients.
Reference
[1] Riggare S.E-patients hold key to the future of healthcare.BMJ. 2018 Feb 26;360:k846. doi: 10.1136/bmj.k846.
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Li Yongjun
Shengjing Medical Journal Press
Shengjing Hospital of China Medical University
36 Sanhao Street, Heping, Shenyang, Liaoning 110004, China
Competing interests: No competing interests
Re: E-patients hold key to the future of healthcare
e-patients are already here – excellent! The NHS has begun toem brace and support them in a small way, through enabling people to book appointments, order repeat prescriptions and access their GP record, online. What is exciting is that this small step opens up further opportunities to support not only highly motivated e-patients, but ALL patients. Old and young, fit and less fit, those passionate about health or wanting to keep as far away from clinicians as possible.
Apps and websites such as those offered by Evergreen Life https://e-life.co.uk aim to enable people to take as much control as possible and wanted over their health and healthcare. Building on these basics, we can improve communication, improve safety, save time and money.
People can now hold and own their record, combining in one place their GP and their Personal Health Records - they can offer this for research and share it with whom they choose. We will be able to help people stay as fit and well as possible through personalised support. We can enhance social aspects of health through social prescribing. We can help keep people up to date with current developments in their chosen health area.
We want to support e-patients – and everyone – to take more control over their health and healthcare and to change healthcare for the better.
Dr Brian Fisher
Clinical Director of Evergreen Life
Competing interests: I am Clinical Director of Evergreen Life, a company that is on the NHSD Framework, delivering NHS services to patients. We can enhance the experience and opportunities for e-patients and the wider population.