The case for end-user involvement in design of health technologies

Introduction

The aim of this small, pragmatic study was to explore the practice, views, expectations and attitudes of registered nurses and nurse leaders working in community/primary health care settings specifically concerning electronic health records, the use of mobile devices and access to data storage platforms.

Background

E-health is an overarching term describing health informatics, telemedicine services and information delivered or enhanced through electronic connectivity, the Internet and all related technologies. There have been many recent developments in health information technology and its increasing use by multidisciplinary teams. These include the development of systems by which patient records and results are stored and accessed in digital formats throughout the health system (electronic health records). ¹ Personal health information is increasingly available (with appropriate access) across disciplines and healthcare organisations. Settings can include homes, primary care, secondary care, residential care and pharmacies. Disciplines include doctors, nurses, allied health professionals and pharmacists. Devices such as lap tops, tablets and smart phones which have functions such as Internet access, blue-tooth, video and sound recording capacity may now (or shortly) be taken out and used in the community, and within people’s homes.

All health practitioners are expected to have a working understanding of basic information technology (IT) and to use it within their practice. Competency 2.3 of the Nursing Council of New Zealand’s Competencies for registered nurses requires nurses to ‘Demonstrate literacy and computer skills necessary to record, enter, store, retrieve and organise data essential for care delivery’ (p.16). ² Further, Nurse Executives of New Zealand (NENZ) have produced a position statement which outlines key considerations for nurses when using e-health. ³ The NENZ document focuses on nursing practice including obligations to ensure that ethical, safe and therapeutic relationships are not compromised by an electronic delivery medium. NENZ also call for nursing and nurses to be fully involved, and to inform and evaluate the development and delivery of new e-health initiatives. While improved communication and easier access to patient records may be clinically useful (particularly in primary care and the community), the knowledge and understanding of nurses regarding the issues and practicalities of e-health usage may not match either professional best practice or public expectations. How nurses working in the community in New Zealand actually engage with e-health is not well understood.

An initial literature review revealed little relevant, recent research on this topic in New Zealand, though acknowledgement that practitioner acceptance and understanding will be crucial to implementation was identified by health informatics researchers at Massey University. ⁴ International research has also identified that user acceptance of e-health is crucial to successful implementation. ⁵ Concern about lack of detailed understanding of new e-health systems and safeguards, perceptions of the potential to be involved in breaches of privacy (with attendant consequences for employment and professional regulation) and concern regarding patient acceptance of electronic health records are significant factors yet to be addressed in many community health settings, and it is essential that staff are involved and supported to implement these changes and have their fears and concerns identified and addressed. ⁶ Community settings, where interfaces between primary, secondary and residential care, and between multidisciplinary health care teams including pharmacists and allied health professionals have great potential to benefit patients and increase efficiency, may also have the greatest potential for issues of privacy and technology failures to cause confusion, distress or even harm. While the overwhelming proportion of healthcare data breaches in the USA in 2013 (84.9%) involved theft and hacking, a not insubstantial 10.6% of breaches were accounted for by inappropriate access, loss or improper disposal. ⁷

For public acceptance too, it is important that health professionals understand and can communicate the issues surrounding access to and use of e-health records and IT simply to patients. In addition to concerns the public may have about privacy, there are professional concerns regarding data integrity (cloning content or restrictive ‘pick lists’) and data availability (platform instability, outages and password failures, particularly in emergency situations) from clinicians about ‘paperless’ systems.

Method

Following ethical approval, maximum variation purposive sampling was undertaken to recruit nurses working in a range of organisations at different stages of the introduction and use of electronic patient records and/or mobile technology. Individual, paired and focus groups were undertaken with nurse leaders, managers and community nurses exploring the use of these technologies and issues and understandings surrounding patient confidentiality and e-health. Data were recorded, transcribed and analysed descriptively using a general inductive approach seeking common themes and perspectives. ⁸

Results

A total of 36 people took part in the study. Individual interviews were undertaken with four senior nurse leaders and two experienced community nurse managers. Four focus groups were undertaken with six New Zealand Nurses Organisation (NZNO) professional nursing advisors, eight practice nurses, 12 district nurses (most of whom had been in post for many years), and two nursing students on placement in district nursing teams. A paired interview was undertaken with two NZNO medico-legal lawyers. Participants came from seven different employment settings and from both urban and rural health environments.

Many aspects of e-health were acknowledged as helpful by nurse respondents. These included electronic decision support (where available) and the ability to have direct and secure communication with patients. Nurses working in the remote and rural parts of New Zealand also valued telemedicine facilities that allowed video-linked consultations with oncology, palliative care, paediatric and vascular specialists. The potential for fully accessible shared patient records to facilitate multidisciplinary team (MDT) communication and enhance patient care was also widely appreciated. Knowledge of appropriate access and safeguards to privacy was good. The use of mandatory fields, prompting and the audit trails and elimination of handwriting-related errors were all cited as improving patient safety.

However, there were many barriers to the effective use of technology by community nurses in some settings. Access to appropriate technology and devices was patchy. While some organisations had invested heavily in software, devices and staff training, and some respondents had been involved in piloting devices, most of the practice and district nurses reported having had little access to smartphones, tablets, or cell phone coverage while out visiting patients, or even access to adequate computer terminals once back at base. Some older nurses who had trialled devices commented that small screen size and tiny keyboards were not user friendly. New requirements for duplicated recording media (hard copy patient notes, faxed results couriered to central notes facilities, and some records made on electronic systems) were perceived as providing additional and fragmented work for nurses. One particular assessment tool for aged care (InterRAI) was reported as contributing adversely to nurses’ workloads, as the electronic clinical assessment tool that is being used by the Needs Assessment Service throughout New Zealand. In one rural location, regular power and broadband outages caused a lack of confidence in the systems. Additionally, cell phone coverage was patchy due to rural isolation and topography.

Some work-around practices that nurses developed to address lack of cell phone/tablet coverage due to geographical isolation included printing out labels containing large amounts of patient information, and sticking these into diaries to facilitate appointments. This decreased security, and may not have been anticipated by the system designers.

Nurses were aware of potential risks related to e-mails, mobile phones, answer phones and FAX machines. They were also aware of the rapidly changing use of social media, of (patients or nurses) uploading photographs from cameras, and the risks that these pose to both patient confidentiality and nurse professionalism. They trusted those charged with protecting the systems against malicious or fraudulent IT security breaches, and appeared well-briefed on good computer security procedures in the workplace. IT support was generally reported as being adequate.

However, one of the biggest obstacles to maximising the benefits of shared records or clinical decision support was the requirement for multiple, different and frequently changing passwords and logins for each application.

Well actually I stopped going to Medtech now although I love the programme and did use it for many years, but it just is another password to remember and it expires if you don’t go into it every week just about and so then you’ve got to go through the whole process again. [Sue]

Specific instances where technology could have enhanced clinical management involved the use of digital photography to record wound healing. However, network IT security concerns meant that in one setting the placement of the digital photographs required a complicated ‘work around’ involving an administrative support person, and in another setting it was apparently ‘not possible’ to store photos electronically so that hard copies of photos were printed out and kept in patient files. This also prevented the use of cameras on smartphones to facilitate on-the-spot specialist consultation and telecare.

This is what’s missing is when you print something off which is a photo say that’s what you see but if you’ve got it online you can zoom in, you can look at the pictures you can look at the bed of the wound much more clearly can’t you, so you know I think it’s a real barrier to patient care that you can’t have the photos loaded onto the system. [Deb]

Discussion

It was apparent in all settings, and at all levels within the services and organisations that were part of this small study, that nurses understand and adhere to high levels of protection of patient privacy. We believe that any privacy concerns about electronic patient records and their use by nurses in the community are unfounded.

It was also apparent, however, that while generic issues related to electronic health records and access to e-health more widely have been largely addressed, the diversity of the nursing roles in community settings has proved more of a challenge. Small pragmatic studies such as this one are able to highlight areas for improvement: and can advocate for the needs of the end-user rather than the capabilities of packages and systems being paramount.

This study confirmed many barriers to the optimal use of health technology. Among these were access to appropriate hardware (computers, lap tops or tablets and smartphones), practical issues related to cell phone or Wi-Fi coverage, lack of standardisation between systems, meant that the potential for this technology to enhance nurse working lives, or patient care, is not being fully utilised. It was striking that one employer (an early adopter) who had invested heavily in the involvement of end-users at all stages of design, training and roll-out was seeing great benefit from this investment.

There was evidence from this small study that the training required for successful implementation of e-health had been underestimated. From the literature, lack of knowledge and skills in this area are a significant barrier to full utilisation, and there have been calls for e-health training to be far more prominent in the education of pre-registration nurses. ⁹

Greater end-user involvement in the design of systems and software may have led to the identification of the need to provide secure, version-controlled storage for draft documentation. It should certainly have informed the inclusion of modules that allowed ease of storage and access for clinical photography. The particular issue related to difficulties caused by multiple and varied computer access logins, and the difficulty in managing these, could perhaps be solved by application of existing technologies such as those used for on-line banking, including Kerberos or network authentication protocols designed to provide strong authentication for client/server applications by using secret-key cryptography.10

As has been reported internationally, ¹¹ potential workflow disruption due to additional demands by e-health can pose a significant barrier to adoption and use. Poorly implemented roll-outs, lack of training, access to hardware, and poor consultation have also previously been identified as key factors limiting the effective use and uptake of e-health. ¹² There have been conflicting reports regarding whether the introduction of e-health increases or decreases nurse workloads, or whether its use enhances or detracts from available time for direct patient care.^13,14 There is, though, considerable agreement about the importance of health-professional-informed e-health training in increasing confidence and engaging users and encouraging use of technologies.^15,16

If the benefits use of e-health are to be fully realised, then those most dependent on using the technologies must be involved in every stage of the process – from software development to choice of hardware and to enabling technologies to perform all of the nursing tasks required. The education and support of nurses, and considerations of the impact on workloads and impact on time for patient care, must also be addressed.

Conclusion

E-health has the capacity to significantly improve continuity and patient care. This paper highlights specific examples of a disconnect between some elements of complex nursing roles and the provision of IT solutions to enable full nursing capability: it should serve as a reminder to those who commission and provide health IT systems to involve representatives of the full spectrum of end-users in the design to ensure their needs are met. The standardisation of systems across all healthcare providers would also greatly assist not only community based nurses, but all members of the MDTs who utilise shared electronic health records.