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Editorial

Mezei Sebastian

How might ehealth and digital technologies impact on palliative care?

Sheila Payne

Faculty of Health and Medicine, Lancaster University, United Kingdom

 

There have been extraordinary developments in information and communication technologies over the last 50 years which have impacted on health and palliative care.  The purpose of this editorial is to consider to what extent ehealth and digital technologies remain out of reach of many people with life-limiting illnesses and how does this impact on palliative care practice, with a focus on three examples: electronic health records, telemedicine, and sensors and wearable devices.

What are ehealth and digital health technologies?

The World Health Organisation defines ehealth as the ‘use of information and communication technologies for health’ and have adopted an ehealth strategy (World Health Assembly 2005).  eHealth is recognised as one of the most rapidly growing areas in health care.  According to the European Commission Policy on ehealth: ‘digital health and care refers to tools and services that use information and communication technologies (ICTs) to improve prevention, diagnosis, treatment, monitoring and management of health-related issues and to monitor and manage lifestyle-habits that impact health. Digital health and care are innovative and can improve access to care and the quality of that care, as well as to increase the overall efficiency of the health sector.’ Moreover since 2019, digitalisation has been a key political priority in the European Union, with access for all citizens considered to be essential. Digital technologies refer to a wide range of functions including electronic health records, telemedicine, smartphone apps, sensors and wearable devices (for diagnosis and monitoring disease, and health optimisation), speech recognition and natural language processing, virtual and augmented reality, artificial intelligence and robotics.  The Covid-19 pandemic precipitated a rapid adoption of many forms of ehealth, including in palliative care contexts (Dunleavy et al 2021).

Implications of digital health for palliative care

There are a number of core competences in palliative care including establishing compassionate personal relationships with patients and families, respect for personal values and goals, empathetic listening and communication, enhancing dignity and patient-centredness, therapeutic touch, and psychological, social and spiritual support, which need to be kept in mind when designing digital health interventions for palliative care (Gamondi et al 2013).  For each aspect of care, it is important to carefully consider both the advantages and disadvantages that digital health may bring. For example, according to a systemic review, the use of electronic health records has increased substantially in palliative care since 2014 (Bush et al 2018).  This offers advantages for rapid sharing of information across teams and organisations, with clinicians only needing to ask patients for their medical history once, and it enables them to share information with patients if they have access to their own records.  However, questions remain about ensuring the accuracy, security and privacy of data when it is shared across health sectors, and importantly about the availability of access to devices and the need to maintain and update electronic systems.  Moreover, there is evidence from the USA, that junior doctors (residents) spend up to 50% of their shift time interacting with computers, and only 10% interacting with patients.  This has implications in palliative care where direct interaction with patients is regarded as an essential aspect of compassionate communication.

Telemedicine is a healthcare delivery model that has expanded rapidly in the context of the Covid-19 pandemic when patients with advanced disease were highly vulnerable to infection and mostly preferred to remain out of hospital (Tang and Reddy 2022).  For patients undertaking consultations online, using smartphone apps or via conventional telephones may have advantages in reducing travel time and expenses in clinic visits, especially for those living in rural and remote areas. Patients may also appreciate the opportunity to be proactively engaged in managing their own disease and treatment.  In addition, telemedicine may offer direct access to specialist palliative care providers which in many countries are very few in number. However, this needs to be balanced by recognising that some people such as older people, those with communication challenges (such as non-native language speakers), those with less access to digital devices and connectivity, and less digital literacy, should not be marginalised. The focus on self-reporting of physical symptoms may mean that psychological, social and spiritual concerns may receive less attention (Payne et al 2020). It may also be difficult to establish sufficient rapport to offer complex psychological or spiritual assessment and support using telemedicine alone.

A third area of rapid innovation is in wearable devices and sensors, especially in the context of long-term care for older people (Uddin and Syed-Abdul 2020). In the context of home-based palliative care, these devices make it easier to monitor patient’s condition, require less staff-time in making domiciliary visits, and can provide real-time data such as on physiological parameters and mobility or sleep patterns.  However, does the focus remain on what can be measured and ‘seen’ (such as Fitbit steps), rather than holistic assessments. These devices also raise questions about privacy, where remote monitoring may be regarded as invasive.  There is the risk of having more information about patient’s physiological functions but less knowledge about them as human beings, their values and goals and social situation nearing the end of life.

High-quality palliative care is a responsibility of every clinical team whose role is to provide care to patients with life-limiting illness.  Reaching out to include the innovations offered by ehealth and digital technologies requires a careful appraisal of the balance between advantages and reduction of known barriers for each person to ensure that they are utilised appropriately for the people who will benefit most.

References

  1. Bush RA, Perez A, Baum T, Etland C and Connelly CD (2018) A systematic review of the use of the electronic health record for patient identification, communication, and clinical support in palliative care JAMIA Open, 1(2), 2018, 294–303 doi: 10.1093/jamiaopen/ooy028
  2. Dunleavy L, Preston N, Bajwah S, Bradshaw A, Cripps R, Fraser LK, Maddocks M, Hocaoglu M, Murtagh FEM, Oluyase A, Sleeman KE, Higginson IJ and Walshe C (2021) ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall) Palliative Medicine Vol. 35(5) 814–829
  3. Gamondi C, Larkin P and Payne S. Core competencies in palliative care: an EAPC white paper on palliative care education – part 1. Eur J Palliat Care 2013; 20(2): 86–91
  4. Mamykina L, Vawdrey DK and Hripcsak G. How do residents spend their shift time? A time and motion study with a particular focus on the use of computers. Acad Med 2016; 91(6): 827–832.
  5. Payne S, Tanner M and Hughes S (2020) Digitisation and Patient-Professional Relationships in Palliative Care Palliative Medicine 34 (4) 441 – 443
  6. Tang M and Reddy A (2022) Telemedicine and Its Past, Present, and Future Roles in Providing Palliative Care to Advanced Cancer Patients. Cancers 14, 1884. https://doi.org/10.3390/ cancers14081884
  7. Uddin M and Syed-Abdul S (2020) Data Analytics and Applications of the Wearable Sensors in Healthcare: An Overview Sensors, 20, 1379; doi:10.3390/s20051379
  8. World Health Assembly (2005) Resolution WHA58.28 ehealth Strategy, World Health Organisation, Geneva.