I have edited a special issue for the journal Digital Health on the theme of ‘The senses and digital health: sociocultural perspectives’. Part of the editorial I have just finished for the special issue is excerpted below. The whole preprint of my editorial is here: Preprint of editorial for special issue on senses and digital health
(Edited to note that this editorial has now been published in the journal, and is available open access here.)
A few days before I began writing this editorial, I ran a discussion group with some people who were attending an outpatient cardiovascular rehabilitation program at a hospital in my home city, Canberra. The purpose of the discussion was to discover what sources of information and support people who had recently received hospital treatment for a serious heart condition were using and found valuable. As one of my major areas of research is the social and cultural dimensions of digital health (see, for example, my book Digital Health), I was particularly interested in the digital media and devices they may be using.
I began with general questions about what sources of information the participants had found useful in learning about their heart condition and rehabilitation following their diagnosis and surgery at this hospital. The group members told me that the hospital cardiac rehabilitation sessions were very important to them, not only as a way to learn about recovery and preventive actions they could take to improve their coronary health, but also as an opportunity to interact with other people who had gone through similar experiences. They explained that, together with the sessions they attended as part of this program, the print material (pamphlets and a book) about cardiac rehabilitation that had been given to them by the hospital had been the major contributors to learning about their disease and recovery. They commented that they had been able to discuss aspects of these materials during face-to-face encounters with healthcare staff if they needed to ask questions or receive clarification on any of the information within. Some people had also attended pre-admission group information sessions after their cardiac condition had been diagnosed, which their partner was also encouraged to attend. Others had had no opportunity for this kind of preparation, as they had experienced a sudden heart attack and found themselves in the emergency department receiving medical attention with little warning.
A dominant theme that emerged from the participants’ accounts was their desire to share insights from their experiences about the mysterious and unexpected nature of heart disease or heart failure. Several participants recounted their stories of how they had been diagnosed with heart disease or suffered a heart attack without realising that there was any problem with their hearts. For these people, the best way to share the insights they had gained from their own experiences was to tell their friends and family about it, as a form of warning. For some, friends or family members who had already experienced a heart condition were a source of information. They had listened to these other people recount their experiences and learnt about the symptoms and treatment.
When I moved onto the topic of digital technologies, it was clear that these were not important to most people in this rehabilitation program. Only about half of them even owned a smartphone. Several people said that they used at-home blood pressure and pulse rate monitoring devices as a way of tracking their heart health. They had purchased these from pharmacies, on their own initiative, rather than being encouraged to do so by their doctors. They printed out the data from a spreadsheet they maintained, or recorded their details with pen-and-paper, and showed this information to their doctors on follow-up appointments.
None of the participants used a digital device like a smartphone app or wearable device for monitoring their blood pressure. A small number did use these devices for tracking other body metrics, such physical activity levels. They were all in the younger age group (aged below 60). In terms of online sources of information, very few of the group had searched prior to their diagnosis for information related to any symptoms they may have experienced. About a third of the participants did go online after their diagnosis or surgery to seek information. However, none of the participants had ever used a patient support online forum or social media community for their health condition. When asked what they will do once they have finished the six weeks of the cardiac rehabilitation program, some mentioned that they would join one of their local gyms to continue their exercise routines. None was interested in joining an online patient support group at that point.
Reflecting on this focus group discussion as I write this editorial has highlighted some of the key issues I envisaged the issue as exploring. While my initial focus was digital health, these responses proved enlightening to me in their very de-emphasis and backgrounding of the digital. They provide a compelling counter to the techno-utopian visions that are often put forward by advocates of digital health technologies and the ideal of the ’digitally engaged patient’ that has become so dominant in the technological, medical and public health literature.
Profound affective and sensory aspects of living as a cardiac disease survivor were expressed in the participants’ accounts. For them, a key issue in how information about cardiovascular disease is communicated and shared was finding some way to let others know about the diverse symptoms that are not always recognised as signalling a heart problem. They reflected that they themselves in many cases hadn’t recognised the symptoms when they were living through the experience. The discussion group provided a forum for people to tell stories of hidden illness striking suddenly and catastrophically. They emphasised the uncertainty of not knowing what the physical sensations they were experiencing were, and whether they should be concerned and seek immediate medical attention.
Listening to their heart disease stories, and reading over them later as transcripts, I was reminded of Arthur Frank’s influential book The Wounded Storyteller, in which he discusses how people’s illness and physical suffering are expressed as narratives. Frank describes the wounded storyteller as ‘anyone who has suffered and lived to tell the tale … a guide and companion, a truth teller and trickster. She or he is a fragile human body and a witness to what endures’.
In the face of this uncertainty and experiencing life-threatening illness, major surgery, and then long recovery, the medical care and continuing support provided to the patients were vital to their sense of security and confidence in the integrity of their bodies. The participants’ positive feelings towards the rehabilitation program and what it offered them were obvious in their accounts. While the space and people were unfamiliar to me, I could perceive that the group members felt at ease coming to this space to which they were now habituated through their twice-weekly visits, and with staff who knew them and spoke to them kindly, and the other cardiac disease survivors in the group they had come to know. Compared with the strength of feeling about the face-to-face encounters they had in this program, the support and information offered by digital technologies were very much in the background. They were simply not important in these people’s everyday experiences of recovering from and managing their cardiac conditions.
These people’s experiences as they recounted them with filled with sensation and affect: the intense and sudden pain they experienced when having a heart attack, the surprise they felt at being diagnosed with a heart condition, the relief of having survived a serious medical problem and, in many cases, major surgery, and the comfort and reassurance of being supported during their rehabilitation by hospital staff and other group members. These were people whose everyday routines and assumptions about their bodies had been thrown into disarray. They wanted to be able to convey these sensory and affective experiences to me, and to others to warn them and instruct them on how to interpret their bodily signs and symptoms.
For this group, comprised of people who in many cases were not highly digitally literate or regular users of digital devices, digital technologies were on the margins of their care and support, or simply non-existent in their lifeworlds. It was the health professionals at the hospital, the other group members, the space provided for them to which they had become accustomed, and the print material given to them at the hospital that were the important and trusted elements in lifeworlds which they were moving and recovering their bodily integrity and confidence. The findings from the discussion group raise further questions about what further support should be offered to people once the six weeks of the rehabilitation program are over, and whether this should be mediated via digital technologies or provided in other ways.