Innovations in self care and close care made during COVID 19 pandemic: a narrative review

John Øvretveit (Karolinska Institutet (KI), Medical Management Center, Stockholm, Sweden) (SLSO, Region Stockholm, Stockholm, Sweden)

International Journal of Health Governance

ISSN: 2059-4631

Article publication date: 30 March 2021

Issue publication date: 4 June 2021




Previously, health self-care and informal or “close-care” for family and friends were receiving increasing attention, but became more important during the COVID-2019 pandemic. Sometimes, this was because formal services became less physically accessible to patients and were overburdened by patients ill with COVID-2019. The purpose of this paper is to give an overview of this phenomenon and consider the implications for clinical governance.


A five-step search and narrative review method were used, and case examples were selected to illustrate some of these developments.


Examples discovered and described include innovations in websites, social media support groups, systems for matching volunteers to people needing of help, computer and mobile phone applications, digital devices and virtual health rooms run by peer volunteers to help others to learn and use digital technologies.


In response to their health self-care needs not being met, some patients and carers and their associations developed new digital technologies or adapted existing ones. This use and their innovation separate from health care have been largely unreported in the scientific and professional literature. This is the first review of grey literature and other reports of this growing phenomena.



Øvretveit, J. (2021), "Innovations in self care and close care made during COVID 19 pandemic: a narrative review", International Journal of Health Governance, Vol. 26 No. 2, pp. 88-99.



Emerald Publishing Limited

Copyright © 2021, Emerald Publishing Limited


Most health care is provided by ourselves to ourselves as self-care and to others when we act as informal carers (“close-carers”), and this has been so for most of human history. Alongside, there have been specialists in health care in tribes and other communities. In the past century, health care has become one of the largest industries and set of occupations in many nations. Our self-care has become less visible, under-valued and viewed by some as ineffective.

Over the past 50 years, digital technologies have been increasingly used by health care and for health self-care (HSC), and this was accelerated by the advent of the internet (Peeters et al., 2013). It is widely reported that the COVID-2019 pandemic led to a rapid increase in patient's and close-carers use of digital technologies during the pandemic, with many using some to assist their HSC activities (Golinelli et al., 2020). The efficacy and safety of the technologies and the validity of the information available from the internet varied from high to harmful.

Less reported in the scientific literature is the rise in both the invention and adaptation of different digital technologies for self-care and carer support by patients, carers and others outside of health care. Many have been documented and shared by patients and others in the “grey literature” and other internet publication fora. The purpose of this article is to give an overview of some developments in this field and consider the implications for researchers, health care and others.

The significance of HSC and of help for self-care

For many people, caring for others is a natural response to suffering, especially those with whom we are related or are in close contact (Churchland, 2019). Without such close-care and self-care, formal healthcare services would be unsustainable. The COVID-2019 pandemic made us more aware of this: in many countries, the primary reason for stringent laws to reduce infection and other advice was to avoid overwhelming health services. Yet, self-care and close-care can also be harmful if we provide unsafe care to ourselves or to others: the effectiveness of HSC can often be improved by evidence-based information or education (Fiske et al., 2020).

The evidence and rationale for increasing and improving self-care have been the bases of government, insurance companies and employers' policies to develop self-care (e.g. UK NHS, 2019). The motives include saving money and, from a political ideological perspective, promoting personal independence and responsibility. Promoting some HSC and close-care is becoming a point of political conflict, proposed by some as “offloading the responsibilities of the state” onto women carers and people who may not be able effectively to self-care for their health (Lupton, 2013).

Health-care services and clinicians have promoted self-care and self-management of chronic conditions in a number of ways. Questions have been raised about the understanding of some clinicians of their patient's circumstances, ability and willingness to undertake self-care. Clinicians and health services have also been criticised for equating self-care with treatment adherence or unnecessarily increasing patient's dependency on services and medications when they could promote behavioural, lifestyle and social changes that are more sustainable and increase people autonomy. Digital technologies have been increasingly used to support self-care and informal care, typically information and education provided through websites or internet online platforms.


  1. HSC: Health care provided by ourselves to ourselves, and to others when we act as informal unpaid carers for the health of our family, friends or neighbours by providing “close-care”.

  2. HSC user-innovators (HSC UIs): Patients, close-carers or citizens who individually or collectively create a service or product to meet their own health needs.

  3. HSC digital health technologies (HSC DHTs): Those that enable patients, close-carers and citizens to enhance their health, through enabling their health promotion, protection, diagnosis, treatment and rehabilitation, to maintain their health or reduce deterioration. (Examples are reliable health information internet sites, devices such as oxygen saturation monitors and smartphone apps such as COVID-2019 alerts.)

  4. Helping self-care: Enabling a person to care for themselves and to reduce unwanted dependence on other's care.

  5. Social determinants of digital HSC: Influences in a person's social and physical environment that help or hinder that person's ability to use digital technologies to perform effective self-care or to care for others.

  6. Internet online platform: A digital service that facilitates interactions between two or more distinct but interdependent sets of users (firms or individuals) who interact through the service via the internet (OECD, 2019). It may be owned or run by a commercial business (eBay, Facebook), a health service or a patient or carer group (“online health community”, Wang et al., 2017).

  7. Innovation function and form: The function of an innovation may be performed by different “forms” (Hawe et al., 2004). (An innovation function to provide information may be performed by a website, email with .pdf attachment, an internet video or by a person telephoning to give the information.)

The COVID-2019 pandemic demonstrated the significance of HSC and informal “close-care”. To stay healthy, billions of people had to learn and consistently practice new behaviours to avoid infection. Some increased their healthy living behaviours. Millions ill with COVID-2019 self-cared through their illness, and some also self-cared during long recovery phases, finding little understanding or help from formal care (Øvretveit, 2020). Millions of friends, family and community members cared for the mental and physical health care of others. Many with existing chronic illnesses, or who became ill with other diseases, cared for their condition through self-care without physically visiting formal care services and often without any contact with these services. People became both more and less dependent on formal care.

Digital technologies and health self-care

Many people could not have survived mentally or physically during the COVID-2019 pandemic without digital technologies to assist their self-care and co-care. People used technologies already offered by health services and others, often adapted for the pandemic. The most well-known are internet information sites, patient portals and telemedicine. These have been increasingly described in the published peer-review literature.

Less well known are the many innovations and adaptations by citizens, patients and close carers (“public users”) who invented new digital technologies or made new uses of existing digital technologies such as social media network internet platforms. This has been described as one form of “user innovation”, which is “one that a firm or individual makes to use themselves” (Von Hippel, 2018). Research has reported a number and variety of patient innovations before the pandemic (Habicht et al., 2012; Oliveira et al., 2017) and patient innovations in digital technologies for self-care (Kanstrup et al., 2020).

This overview and the case examples below describe the rapid increase development or adaptation of existing digital technologies for HSC and close-care during 2020 by patients, carers and independent associations. Most are not reported in the scientific and practitioner literature. The objectives of the article are to highlight developments not widely known, which are occurring outside of the formal health system, and consider the implications for researchers, practitioners, health services and policy.


The method used to find less well known but significant digital innovations developed in response to COVID-2019 for self-care and close-care was to search and select information using different methods. A digital search was undertaken using different search term combinations, following the five-step guidance for searching the grey literature (Gregory and Denniss, 2018), and by consulting contacts in the self-care, carers support and patient innovation movement known through research projects into digital health in the Nordic countries, co-care and current projects (Øvretveit et al., 2008; Øvretveit and Degsell, 2019).

A search was also performed of websites specialising in innovations by and with patients, including the Patient Innovation Platform (2020) and the Society for Participatory Medicine (2020) website, as well as other websites including Covid Innovations (2020), Self-care forum (2020), National voices (2020), Product Hunt (2020) and digital media sites that had published information about patient and carer innovations (Digital Health, 2020; Med-Tech News, 2020).

The criteria for selecting the examples noted below were (1) invented or extensively developed or adapted to assist more effective self-care or close-care in response to COVID 19 pandemic in 2020; (2) of significance to patients, close-carers, clinicians, health care and health policy because of the implications for increasing effective self-care or close-care, including implications for researchers because of the need for evidence, and for digital health innovators and industry.

Overview and examples

No studies with empirical data about digital innovations for self-care and carer self-care developed by patients or close carers during the COVID-2019 pandemic were found in a PubMed, Cochrane and Epistemonikos search of peer-reviewed journals in August 2020. As regards peer support, 11 studies with empirical data regarding peer support programmes for health-care professionals developed by health-care systems or health-care organisations were identified. All the examples described below are from non-peer-reviewed reports identified using the grey literature search and contact methods described above. One source was the “patient innovation platform”, which reported digital innovations that assist self-care developed during the COVID-2019 pandemic that included 43 websites, 17 mobile apps and 24 electronic innovations (out of 196 digital innovations listed in December 2020 (Patient Innovation Platform, 2020)). Over 50% of the digital innovations listed on this website that started in 2014 were patient innovations for self-care developed and reported during 2020 in the COVID-2019 pandemic.

The digital innovations and adaptations made by and with patients in response to self-care needs arising during the COVID-2019 pandemic that were identified could be classified as the following types : information websites, social media network peer exchange, service systems for matching helpers to persons in need, computer and iPhone applications (“apps”), training and peer support virtual health rooms and digital devices.

Information websites

During the pandemic, patients and carers started new websites or blogs or adapted existing ones to address needs and to share information not provided by other information sources. Many of these were for specific diseases, but many carer or patient associations also adapted and improved their sites with dedicated COVID-2019 information. Perhaps, the most significant were those for and by people who found that they were not recovering as expected from their covid illness. These patient groups were the first to identify ”long covid” and to start patient-led research into the syndrome. One provided the first substantial report of sufferers' experiences and the remedies they had used for self-care (Patient led research for COVID-19, 2020). The patient and carer information websites on long covid are described in a report (Øvretveit, 2020).

Digital exclusion and the digital divide describe how digitalisation may disadvantage those who do not have access to or find challenges in using the internet (Choi and Dinitto, 2013; Honeyman et al., 2020). A recent US study found that this particularly affected low-income, disabled and homebound adults and older adults (Gilson et al., 2020). During the pandemic, different patient groups and others adapted or created different innovations to reduce digital exclusion. One example is the UK “Citizens Online”, a digital skills charity that innovated and increased their to support self-care and carers, including training for “digital champions” to train others, a free always-open helpline for older and “telephone friendship” where they match volunteers with older people and to connect people with local services in their area, as well as maps showing areas where more people live who are not using internet services (Citizens Online, 2020).

Peer exchange, social media, messaging, video communication

Peer support groups are groups of people who share something in common and use their experiences to help each other. “Groupsourcing” is described as users creating groups on social networks around user needs (Chamberlain, 2014). COVID-2019 patients were one of the many patient and carer groups who formed new support groups using social media network platforms such as “Facebook”, “Twitter” and “Instagram”. One group used social media to pursue a campaign to raise awareness about long covid patients' needs (#VoicesOfTheVirus). Groups also used messaging systems such as “WhatsApp” and “Slack” to communicate and exchange information about self-care. The “Body Politic” support group started a social media peer exchange group and issues a weekly email newsletter to share with others the insights of the group (Body Politic, 2020).

Many COVID-2019 patient carer and other carers support groups have been formed for self-care and support using video communication methods (typically “Zoom” or Microsoft “Teams”) and/or telephone (e.g. Carers Covid 19 peer support group, 2020). Many patients and carers also used video-sharing sites to share information with others (e.g. “My Family Has Mild Coronavirus. Here's Our Home COVID-2019 Treatment Plan”). Medical professionals also developed their own peer support and self-care groups, many with regular meetings and some including professional advisors to give training on stress reduction and other self-care (e.g. using “WeChat” (Cheng et al., 2020)).

Matching services

One of the first internet-based systems for helping patients to find and connect with “patients like me” was started by a patient and opened on the internet in 2011, and now has about 900,000 users sharing personal stories and information about their health, symptoms and treatments (Patients like me, 2020). This is perhaps the largest secure patient matching service, and this one and others made adaptations to provide services for COVID-2019 sufferers, as well as for patients with other diseases with health needs arising during the pandemic.

One other type of matching service originally started for older people and provided help to them by recruiting and matching students to help with their needs. The COVID-2019 pandemic accelerated the development of this innovation and also let to adaptations to provide help to vulnerable and disadvantaged individuals and families. It also started an “Assistance from a Distance”, a virtual platform to help the volunteer “Papa Pals” and seniors connect during stay-at-home periods (Famakinwa, 2020). A similar innovation to deliver groceries is one of the many of this type that were developed (Invisible hands deliver, 2020).

Apps – computer and smartphone

Digital applications, mostly for smartphones, were one sizable category of patient or carer innovations developed by them or in partnership with others during the COVID-2019 pandemic. These included:

  1. An app that direct patients and relatives to pharmacies that have the medication they need and indicate where lowest-cost products are available, originally developed by a close-carer and to be scaled up in lower-resource settings (Lamble, 2020).

  2. An app with a platform that lets isolated older people read bedtime stories to children (

  3. An app with a platform, originally for women refugees to access prenatal care and childhood vaccinations, was adapted to help diagnose and report COVID-2019 and provide information in different languages (

  4. An app to provide information about waiting lines outside of local shops (

  5. An app providing real-time accurate information about the COVID-2019 pandemic using a WhatsApp bot giving an automated responses to the most commonly asked questions (COVID-2019 Health Alert), recently scaled up by the WHO for 11 languages (

Training and peer support

One example of an adapted digital innovation during the pandemic is the experiment in Northern Sweden with “virtual health rooms”. The innovation was established in a room in a community building in a remote village and staffed by patient volunteers who helped people with chronic and other conditions to learn how to use internet information websites, telemedicine and remote monitoring devices to assist their self-care (Näverlo et al., 2016). During the COVID-2019 pandemic, this innovation was adapted and made it possible for many more local people safely to access care. There are plans and funding to scale this up to seven more centres in this region (EU, 2020).


Citizens, patients and carers also developed a number of digital devices. One found in the search was a device worn around the neck, which vibrates and glows every time someone gets within a 1 m distance and uses temperature sensor that sends an SMS when the users body temperature rises unexpectedly (Machine maker, 2020). Various robots dispensing hand sanitiser were found, including one made out of Lego bricks (New York Post, 2020). Some voice activation devices or systems can be programmed by patients and carers and a few HSC developed by such users were found, including a number developed using “skills” to programme the Amazon Echo voice activation device “Alexa” to play on demand certain HSC practices (e.g. Bustle, 2020).


This narrative review was limited to identifying innovations and adaptations reported in some of the grey literature and on specific websites as well as some noted by a limited number of contacts working on patient self-care and carer support known to the author. It is likely that another reviewer would discover additional and different examples. However, for the purpose on an initial investigation and to highlight the phenomena, the method and study does provide some findings of relevance to researchers, practitioners, health system leaders and policy makers.

There is evidence of an exponential increase in digital innovations and adaptions made by patients, carers and their associations for patients and carers in response to unmet needs during the COVID-2019 pandemic. One indicator evidencing this is that 50% of these digital innovation solutions listed on a patient innovation website that had been running from 2014 were posted during the COVID-2019 pandemic. The organisers of this website found, in a 2016 survey of 500 of the authors posting novel solutions, that 5% had shared information about their solution with medical professionals (Patient innovation, 2018). The search did not find any empirical studies of these types of innovations reported in the scientific peer reviewed journals.

The search identified digital technologies for HSC developed during the COVID-2019 pandemic that can be conceptualised in terms of the developer of the technology and the phase of development, such as idea, pilot test, iteration and scale up. Using this conceptualisation, four distinct types are as follows:

  1. Some patients or carers originate the idea, e.g. a smartphone app for a symptom diary, then build a prototype themselves, pilot the prototype and use an internet platform to share and scale up for wider use (solely patient- or carer-originated, developed and scaled up).

  2. Some may originate the idea, but work closely with others to make a pilot, test it and develop it further by partnering with an organisation independent of healthcare (patient- or carer-originated and jointly developed and scaled up).

  3. Some are jointly originated and developed by patients or carers with organisations independent of health care (jointly originated and developed outside of health care).

  4. Some digital technologies for HSC are originated by formal health-care providers and involve patients or carers to develop and or disseminate the technology.

The published peer-review literature increasingly describes innovations falling into the last category. The above overview and the case examples concentrated on the first three developed during 2020 and especially the first category, as most of these are not well known or are unpublished in the scientific and practitioner literature and illustrate the rapid changes in this field instigated by the COVID-2019 pandemic.

The two frequently reported digital innovations and adaptions found in the search were patient- and carer-run internet information websites and social media peer support systems. Previous research has found some evidence of the effectiveness of digitally assisted peer support for some health conditions and outcomes, mainly for mental health and diabetes (Litchman, 2020, Ramchand et al., 2017, Dale et al., 2008; Ploeg et al., 2018). Few voice-activated and few artificial intelligence (AI)-assisted innovations were found, possibly because the search focused on innovations developed or adapted by patients and carers, and there is not yet sufficiently simple programming tools to enable non-specialists to programme systems for voice-activated or AI innovations (Folsted and Branntzaeg, 2017). Additionally, many of these systems are not compliant with health regulator privacy requirements without extra software and systems to protect users health data.

As regards future research into self-care generally, one recent meeting of researchers identified six specific knowledge gaps to address to improve that also apply to user-developed digital technologies for self-care: the influence of habit formation on behaviour change, resilience during stressful life events, the influence of culture on self-care behavioural choices, the challenges performing self-care with multiple chronic conditions, self-care in persons with severe mental illness and the influence of others (care partners, family, peer supporters and health-care professionals) on self-care (Riegel, 2020). A recent review provided eight recommendations to improve research into this subject that also apply to research into digital innovations for self-care, including research into how the innovation is thought to work, which also includes patients' understandings and preferences (Jaarsma et al., 2020).

Perhaps, the most pressing issues about which there is limited research that can be translated into action are how to reduce digital inequities and the spread of questionable information. As regards the former, there is evidence that Web-based self-care interventions for chronic conditions are beneficial for some social groups (i.e. minority ethnic groups, adolescents with divorced parents), but that some groups did not benefit (i.e. mainly those classified with low education and unemployed, Turnbull et al., 2020). The review above noted one programme to reduce digital exclusion, but it is likely that there were more programmes developed with or by patients and carers for this purpose that need to be documented and evaluated if we are to avoid increasing the digital divide by scaling up innovations to which digitally disadvantaged groups do not have access. How these innovations address both information literacy and health literacy are important issues.

The subject of unverified, or false information, is perhaps one of the most significant potential limitation to patient- or carer-managed websites and social media innovations. Much information provided in the patient-operated websites and social media innovations is unsupported by evidence and some is potentially harmful. The first reports and discussions of long covid is one example that were later found to be important and valid and were not accepted for some time by authoritative medical sources. At the same time, such medical sources were also providing information that did not meet the usual criteria for evidence. Many people have high trust in peer recommendations and information, especially those who distrust authoritative medical sources of information. People may begin to ignore scientific evidence being repeated, especially if confusing to them. Instead, many people listen to people like them describing their experience or telling real or imagined stories. It is reported that members of some support groups fact-check the information. One such COVID-2019 peer support group, “have it/had it”, is reported to have a 17-person fact-checking team, which includes two nurses and a biologist that reviews every post on the social media site. The “Body Politic” COVID-2019 support group also uses human moderators and are considering using artificial intelligence software for fact-checking (e.g., as well as testing approaches listed in the “Tools That Fight Disinformation Online” online listing (RAND, 2020). Further research is needed into how best to protect patients and carers from acting on information that may be harmful and to enable them better to assess the validity of information.


It is hardly possible to imagine living through the COVID-2019 pandemic without digital technology. Many more people would have suffered and died without these technologies. These technologies were relied on by many people to help self-care for their health and to provide care to others. Patients and carers also contributed by developing digital innovations and adaptions, but this activity was largely unreported in the scientific literature. The search and narrative review methods used in the study reported in this article were suited to the purpose of highlighting and beginning to map a phenomenon, with significant implications for the future. Future more comprehensive and systematic review methods are needed for a fuller documentation and assessment of how the COVID-2019 pandemic led to a rapid increase in patient's, carer's and their associations innovations outside of formal health care.

The study found a large and significant number of patient and carer innovations and adaptations for support for peers developed by them in response to their unmet needs in the pandemic. The two most common were patient- and carer-run internet information websites and social media peer support systems. One of the latter discovered “long covid” and carried out the first patient-led research on the subject when most sufferers faced disbelief and indifference from their doctors. Other innovations and adaptations, some of which are being scaled up, are computer and smartphone apps providing different services, solutions to reduce digital disparities, as well as systems matching volunteers to older people and disadvantaged people and patients to meet some of their needs and “virtual health rooms” in remote areas, run by patients for their peers to enable people to learn how to use the internet for information, telemedicine and telemonitoring. Questions for future research identified include: how the implementation of these innovations was achieved; which innovations could be scaled up; and the safety, costs and effectiveness outcomes of different types? Two important questions little considered in the reports reviewed are how to reduce digital inequities and the spread of questionable information. There is also the wider question of whether or which responsibilities usually fulfilled by health care have been transferred to patients and carers and whether these will be returned to health care in 2021 and 2022, in the way schooling has been transferred.

One of the purposes of this overview was to draw the attention of researchers and others to these developments and their implications for health services during 2021 and beyond. Describing these innovations is the first step towards evaluating their effectiveness and considering how those that are effective could be scaled-up or integrated into health care. It is also a first step in considering how this type of user innovation could be further supported to contribute to improving the self-care and close-care that needs to form a more valued part of health care in the future.


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Further reading

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The authors wish to acknowledge the funding support of the medical management centre that this research draws on for the 2007 review of digital health by patients in the Nordic countries and the Forte research funding agency for the “co-care” project 2015–2020 and for the “Patients in Front” programme 2019–2025.

Corresponding author

John Øvretveit can be contacted at:

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