Patient Experiences with Technology Enabled Care Across Healthcare

Leonardsen et al. BMC Health Services Research (2020) 20:779 https://doi.org/10.1186/s12913-020-05633-4

RESEARCH ARTICLE Open Access Patient experiences with technology enabled care across healthcare settings- a systematic review Ann-Chatrin Linqvist Leonardsen* , Camilla Hardeland, Ann Karin Helgesen and Vigdis A. Grøndahl

Abstract Background: Healthcare services are facing extensive challenges due to the increased proportion of elderly persons and persons with chronic disease. Technology enabled care (TEC) is a collective term for telecare, telehealth, telemedicine, mobile (m)-, digital- and electronic (e) health services. TEC is increasingly seen as a solution to many of the challenges facing the health sector. Patient perspectives may provide a useful evaluation tool for new healthcare technologies that have limited clinical data to support their effectiveness. More studies need to be done to better understand the acceptance of technology in healthcare. This review aim to summarize empirical studies exploring patient experiences with TEC. Findings in this study can be used to better understand what is needed to develop, implement and improve such services. Methods: Systematic searches were conducted in the Pubmed, Psycinfo, Cinahl, Embase, Cochrane systematic reviews and Cochrane clinical trials databases. These studies were systematically reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines, subjected to quality appraisals using the Critical Appraisal Skills Program (CASP), and synthesized via integrative analysis. Results: After removal of duplicates, languages other than English, and non-scientific records, 4087 titles and abstracts were screened. After assessment against inclusion and exclusion criteria, 69 records were screened in full- text, and underwent quality appraisal. 21 records were included in the integrative analysis. Patients’ experiences with TEC related to 1) technological features, namely functionality and appearance, and 2) evolving independence, namely empowerment, autonomy and security. Technological challenges lead to frustrations and negative experiences, while a stigmatizing appearance lead to patients not using the solution. Through the use of TECs, patients felt more empowered, learning about their condition, increasing awareness to their symptoms and treatment, and feeling more safe and self-efficient. Patient participation was seen as a central aspect of the development of the TECT, as well as when using it. Conclusion: This review deepens the understanding of patients’ experiences with technology enabled care solutions. Patients’ experiences not only relate to the practical/technical element of the device or solution, but to how this impact on their everyday life. Patient participation in development and planned use of such solutions should be considered an integral part in healthcare quality initiatives. Keywords: Digital health, Technology enabled care, Telehealth, Telemedicine, E-health, Digitalization, Patient experiences

* Correspondence: [email protected] Department of Health and Welfare, Ostfold University College, Postal box code (PB) 700, NO-1757 Halden, Norway

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Background claims of effectiveness [25]. Experience-based measures Healthcare services are facing extensive challenges due differ from measures of satisfaction, which have previ- to the increased proportion of elderly persons and per- ously been used as an index of how care has been re- sons with chronic disease [1–3]. Despite increasing ceived. ‘Satisfaction’ is often seen as the gap between treatment complexity, hospital length of stay is decreas- patients’ expectations and actual experiences. Hence, ing [4]. In addition, there are not enough healthcare pro- ‘patients’ experiences’ provide more tangible information fessionals to manage the increasingly complex patient on how a service can be improved, and is less to prone care needs [5]. These societal changes challenge the to the influence of patient expectation, which is known structure, finances and capacity of all healthcare service to be influenced by varying factors [26–29]. levels. Technology enabled care (TEC) is a collective There are various barriers to the deployment of TEC, term for telecare, telehealth, telemedicine, mobile (m)-, such as concerns about quality, reliability, privacy and digital- and electronic (e) health services. TEC involves security. Moreover, it has been claimed that the design the convergence of health systems, digital media and of TEC solutions have been technology-driven, without mobile devices, which enables healthcare professionals the involvement of the people they are made for [6]. A and patients to access data and information more easily review from 2017 on recent advances in remote health- [6]. It is increasingly seen as an integral part of the solu- care and patient monitoring claim that more studies tion to many of the challenges facing the health sector. needs to be done to better understand the acceptance of Most people nowadays own a smartphone or a tablet. technology-based methods within the medical commu- This enables for patient participation, e.g. through the nity and patients [30]. use of mobile applications, or apps [7–9]. The develop- Consequently, this review aim to summarize empirical ment and utilization of commercial smartphone apps are studies exploring patient experiences with technology extensive and increasing, also related to management of enabled care solutions in relation to somatic diseases, health-related issues [10]. In addition, solutions for re- treatment and care. Findings in this review may be used mote patient monitoring, where patients outside conven- to better understand what is needed to develop, imple- tional clinical settings have been monitored with help of ment and improve such services. technology, have been implemented with the aims of increasing access to care and decrease healthcare delivery Methods costs. Nevertheless, results are inconclusive on whether A systematic mixed studies review with an intergrated such solutions have the desired effects [11–14]. For ex- design was undertaken to integrate and synthesize find- ample, research on remote monitoring of patients with ings from qualitative, quantitative and mixed methods lung cancer indicated that patients felt well informed, studies [31]. The design was chosen to gain a broader but that they lacked preparation for allpossible proble- knowledge of patients’ experiences with technology en- msthey could experience [15]. A recent study found that abled care solutions in relation to somatic diseases, when daily automated monitoring, self-management treatment and care, by exploring and describing studies coaching and follow-ups using guideline-based decision that included different technology and different health- support were combined with in between-visit care, there care settings. were significant reductions in symptom burden overall The literature was retrieved by searching in four elec- for cancer patients beginning chemotherapy [16]. tronic databases CINAHL via EBSCO, EMBASE and At the same time, healthcare services are moving away PsycINFO via OVID, PubMed via NCBI, in addition to from the “doctor-knows-best” approach, towards a focus the Cochrane systematic reviews and Cochrane clinical on person-centeredness, and with increased levels of trials databases, in the period September 19th to Octo- patient-participation [17, 18]. Research has shown that ber 20th 2019. A specialist librarian was consulted when focus on person-centeredness leads to improved patient developing the search strategy and also run the searches satisfaction, better health, a reduction in the number of to ensure rigour in the search process. References were hospitalization and re-hospitalizations, as well as eco- handled using the End-Note X8 and Rayyan QCRI soft- nomic benefits [19, 20]. This is why national and inter- ware [32]. national organizations have emphasized the importance The Preferred Reporting Items for Systematic Reviews of including patients and their perspectives in the devel- and Meta-Analyses (PRISMA) guidelines [33] were used opment and evaluation of healthcare services [21–24]. to guide the systematic search and to structure the re- Patient perspectives can provide important, relevant view, and the review adheres to the PRISMA guidelines insight into the nature of patients’ needs, the condition, (see supplement 1). and the treatment under consideration. Moreover, this The search strategies were developed based on the fol- may provide a useful evaluation tool for new healthcare lowing PICO framework [34] (see Table 1). The searches technologies that have limited clinical data to support were not limited to time of publication or to study Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 3 of 17

Table 1 PICO: Digital Health Care –somatic health Eligibility criteria Systematic review: patient experiences with technology enabled care Criteria for selecting studies were determined before PI CO the systematic literature search started, and was Somatic health Digitalization Safety based on the aim of the review. The aim was ex- plorative and descriptive, and the inclusion criteria Disease Digital Health Quality reflect this. Patient Medical treatment Patient participation Pre-defined inclusion criteria were: Illness Health Care Patient experience E-health Patients aged > 18 years Technology enabled care Patient experiences Telecare All healthcare settings (including but not limited to primary, intermediate, tertiary, home care) Telemedicine Somatic diseases/dysfunctions Telehealth Scandinavian and English language Computer based technologies Peer-reviewed design. Table 2 gives and overview of the search strategy Exclusion criteria were: in PubMed. Searches in the other databases were similar to the search strategy in PubMed, using the same terms Conference abstracts and phrases, as well as Boolean operators. Unpublished material Dissertations Review articles Table 2 Search strategy in PubMed e-Health technologies, alerts and reminder systems and information resources (e.g. Internet) PubMed Date for search: 19.09.2019 Hits eElectronic health records 1 digitalization [tiab] 957 2 digitalisation [tiab] 178 Study selection 3 “digital health” [tiab] 1235 A modified flow chart shows the identification and 4 telecare [tiab] 719 selection process (see Fig. 1). The electronic database 5 e-health [tiab] 2550 searches identified 5454 records. Duplicates were re- moved which resulted in 4310 records, and a further 6 technology [tiab] enabled [tiab] AND care [tiab] 822 223 records were excluded based on language and not 7 computer based technolog* [tiab] 133 being peer reviewed. A total of 4087 records were di- 8 telehealth [tiab] 4191 vided in two halves. Two and two of the authors in- 9 mobile technology [tiab] 1356 dependently and blinded to each others, screened the 10 m-health OR mhealth [tiab] 4147 titles and abstracts according to their relevance, to 11 “mobile health” [tiab] 3581 ensurethattheeligibilitycriteriaandtheaimofthe study were met. As a result, 4018 records were 12 telemedicine [ti] OR telemedicine [mesh] 26,786 rejected. A total of 69 articles were assessed in full 13 1–12 med OR 37,279 text by two and two of the authors to ensure that the 14 experience* [ti] 239,920 inclusion criteria were met, which left 69 papers to 15 perspective* [ti] 116,673 be assessed for quality. 16 acceptance* [ti] 8655 17 participat* [ti] 35,793 Appraisal and data extraction The Critical Appraisal Skills Programme Tools (CASP) 18 preference* [ti] 27,473 for qualitative and quantitative studies [35] and a modi- 19 14–18 med OR 424,513 fied version by Nordström and Wilde-Larsson [36], were 20 patient [ti] OR patients [ti] 1,756,034 used for quality assessment of each paper included in 21 19 AND 20 42,745 the study. The appraisals related to e.g. whether the re- 22 Patient Satisfaction [majr] 32,722 sults were valid (clearly focused issue, appropriate 23 Patient Acceptance of Health Care/psychology [majr] 14,173 method), if cases were recruited in an acceptable way, data collection justified, as well as ethical issues. The as- 24 21 OR 22 OR 23 84,518 sessments were done by two authors independently. The 25 13 AND 24 1044 results were then compared, and any differences on Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 4 of 17

Fig. 1 PRISMA 2009 Flow Diagram

quality ratings were discussed until agreement was convergent validation (or triangulation) between quali- reached. A simple scoring system rated the papers to be tative and quantitative studies, respectively. Confirm- of high, medium and low quality, and only high ation occurs when the same finding (e.g. positive quality articles were included. A total of 48 articles experiences with a TEC) is repeated within and across were excluded based on low quality. All steps in the both qualitative and quantitative studies. Refutation selection process, the appraisal and data extraction occurs when a designated relationship yields divergent were performed by four independent researchers, findings, or findings in direct opposition [31]. The that fulfills the requirements recommended by Hig- findings might be seen as extending each other, and gins and Thomas [37]. Any differences or uncertain- as a kind of transformation of findings to be able to ties were discussed by the authors until agreement combine them, which is essential in the integrative was reached. In total 21 articles were included in the analysis. synthesis. Results Methods of synthesis Study selection An integrative analysis inspired by Sandelowski et al. In total 4310 records were identified, of which 4098 [31] was conducted to synthesize the data. This records were screened for title and abstract. Of these, method gave data the possibility to be grouped by 69 full text records were screened and quality findings addressing the same phenomenon instead, of assessed, leading to a total of 21 publications in- by methods used in the studies. Confirmation and cluded in the review. The included studies represent refutation are exercised when seeking to establish research from the period 2008–2019, of which 20 Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 5 of 17

was from the period 2013–2019. Of these, 12 studies which was reported as a problem by patients [46]. In used a qualitative design with interviews, six used a another study, the modems reportedly took a long quantitative design with a survey, and three combined time to send the data and sometimes did not actually interviews and survey. The studies included a total of send the data at all, leading to patients not being able 695 participants (333 male), age range 18–88 years. to use the solution [41]. In a study on stroke rehabili- Of the 21 studies, 19 reported the mean age of the tation, patients reported of difficulty putting the de- participants. The mean of these were 61.9 years. The vice on and adjusting it by themselves [41]. A technology included telemonitoring (n =5), sensors frequent need to recharge was also reported as a dis- (n = 4), table computers (n = 4), fitbit (n = 3), applica- advantage [38]. Technical challenges lead to a feeling tions (n = 2), a robotic rehabilitation device, a short- of frustration, and dissatisfaction with the device or message self-management system, and an electronic solution [40, 46, 51]. pillbox. Six of the studies focused on type 2 diabetes, Georgsson et al. found that type 2 diabetes patients three on patients with chronic pulmonary lung dis- saw clear benefits in using an m-Health system and ease (COPD), and two on cancer patients. Other con- had favorable behavioral disease outcomes after using ditions included Parkinsons’ disease, motor neuron it. Suggestions for improving the system were highly disease, cardiac disease, stroke, hypertension, dialysis individual [44]. Need for individual tailoring was also patients, as well as patients with chronic/persistent reported in 57.8% of the respondents in a mobile pain. The studies’ characteristics are presented in weight-loss and lifestyle intervention for patients with Table 3. type 2 diabetes, who reported that culturally tailoring of the program, addressing support mechanisms and Integrative analysis improved site accessibility, enhanced their engage- Results from the integrative analysis of the 21 included ment [50]. papers show that patients’ experiences with technology Regarding appearance, 94.1% of patients with Par- enabled care solutions were divided into mainly two as- kinsons’ disease were willing to wear body worn sen- pects; one aspect related to the technical features of the sors at home, while 85.3% were willing to wear it in solution, and one aspect related to the solutions’ impact public [43]. One patient stated that he “Would prefer on the patients’ everyday life. The theme technical fea- it to be a little smaller and with watch face as keep tures included patients’ experiences with the practical thinking it was a watch I was wearing”.Anothersaid use of a digital device or solution, both related to func- that he would be “Happy to wear (in public) but tionality and appearance of the solution. Moreover, pa- would not like members of public questioning what it tients experienced an evolving independence in their is for as illness is private”. A perceived stigma and everyday life due to the technology, through an in- embarrassment, affecting when participants chose to creased feeling of empowerment, autonomy and wear the device was also reported in another study security. [53]. For example, bulkiness of the monitor was reported a negative feature of the appearance of a Technical features digital solution [41]. To patients, it was imperative that the device or solution functioned well. For example, type 2 diabetes pa- Evolving independence tients reported the importance of clearness of Participants expressed an increased sense of inde- instructions, ease of use, convenience of location, and pendence from their newfound mobility for which that the solution was easy to fit into daily routines. they credited their use of the device [41, 58]. For ex- This implicated that they were satisfied with the solu- ample, 57.8% of the respondents in a mobile weight- tion [40, 47, 55, 56]. loss and lifestyle intervention to patients with type 2 Nevertheless, patients also reported of technical diabetes reported that the mobile health technology challenges. One patient continuing stroke rehabilita- promoted their self-efficacy [50]. COPD patients re- tion stated: «The keyboard is that frustrating I just ported that telemonitoring empowered self- couldn’t be bothered trying to get it to work because management by enhancing their understanding of it wouldn’t» [40]. Other challenges reported by pa- their illness, and providing additional justification for tients were oximetry transmission, device fault, mobile their decisions to adjust treatment or seek profes- signal loss, immobility of the device, and difficulties sional advice [42]. Moreover, a study on telemonitor- placing the device on the body [40, 41, 46]. One ing in motor neuron disease found that patients studyfoundthatthedeviceonlyfunctionedwith emphasized the benefits of timely intervention, redu- wired internet that had to be connected through a cing unnecessary actions and doctors’ visits, making cable through the telephone port in a patient’shouse, patients more self-aware and allowing them to take Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 6 of 17

Table 3 Characteristics of articles included in the systematic review of studies exploring patient experiences with technology enabled care (n = 21), in alphabetic order Authors/ Title Aim Design Technology explored Setting Sample, Summary of relevant Country including findings participants’ characteristics Ando, Experience of To explore Semi-structured Telemonitoring At home An opportunity Five themes Ashcroft-Kelso, telehealth in subjective interviews after system, using the sample of 7 identified: Halhead, people with motor experiences of completing a DocoboLtdCareportal® patients with - benefits of timely Chakrabarti, neurone disease telehealth as 24-week trial. device. MND on NIV intervention Young, Cous- using noninvasive facilitated by the Allows for monitoring were recruited. - reducing the ins, Angus ventilation. Careportal® symptom changes, Age: 49–71 unnecessary 2019 device as a noninvasive years (mean 63 - increased self- United regular ventilation (NIV) years) awareness Kingdom (UK) monitoring related issues, Gender: 2 - taking initiative [40] service amongst nocturnal blood women and 5 - technical people with oxygen saturation men challenges motor neuron levels, and patient- Diagnosis: disease (MND) ventilator interaction Amyotrophic who were using data. lateral sclerosis noninvasive In addition a ventilation (NIV). messaging system for patient-clinician communication. Cherry, Expanding stroke To determine Qualitative in- In-home robotic At home A convenient Benefits of use: Chumbler, tele-rehabilitation participants’ depth semi- rehabilitation device: sample of 10 - increased mobility Richards, Huff, services to rural general structured inter- Individuals with veterans who - a sense of control Wu, Tilghman, veterans: a qualita- impressions views after 3- residual upper limb had over therapy and Butler tive study on pa- about the months usage impairments were experienced a scheduling 2015 tient experiences benefits and periode of 2 h given a Hand unilateral - an outlet for United States using the robotic barriers of using of daily Robotic Mentor™device, while ischemic or physical and (US) [41] stroke therapy de- robotic therapy Assisted Therapy individuals with hemorrhagic mental tension and livery and monitor- device for in- (RAT). residual lower limb stroke. anxiety ing system home impairments were Either hand - increased programs. rehabilitation. given the Foot function or foot independence and Mentor™. The device function mood is comprised a hand significantly improvement or foot peripheral limits activities Barriers to use were component wired of daily living few: into a processing unit Age: 52–88 - size and placement containing the years (mean 62 of the device pneumatic pump and years) - technical a touchscreen Gender: 10 men difficulties interface. The device - wearing and also has a cellular adjusting the modem so that data device from the therapy could be sent to a secure server to be monitored by a therapist. The device is powered through a wall-outlet. Fairbrother, Exploring To explore Semi-structured Telemonitoring At home A purposively Telemonitoring Pinnock, telemonitoring and patients and interviews six sample of 38 increased Hanley, self-management healthcare months into the patients knowledge of their McClughan, by patients with professional randomized Age: 44–85 condition, reinforced Sheikh, chronic obstructive views on self- controlled trial. years (mean 67, their decisions to Pagliari, pulmonary disease: management in 4 years) adjust to treatment McKinstry a qualitative study the context of Gender: 20 or seek professional 2013 embedded in a telemonitoring in women and 18 advice; and, through United randomized con- chronic obstruct- men practitioner Kingdom (UK) trolled trial. ive pulmonary Diagnosis: monitoring, [42] disease (COPD). COPD provided a sense of reassurance. -Knowledge and empowerment -Accessibility and reassurance Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 7 of 17

Table 3 Characteristics of articles included in the systematic review of studies exploring patient experiences with technology enabled care (n = 21), in alphabetic order (Continued) Authors/ Title Aim Design Technology explored Setting Sample, Summary of relevant Country including findings participants’ characteristics Fisher, Body-worn sensors To evaluate the Questionnaire Remote monitoring Both in A sample of 34 94,1% were willing Hammerla, in Parkinson’s acceptability of with Lickert- of symptoms in a patients to wear the sensors Rochester, disease: evaluating wrist-worn sen- style questions Parkinson’s disease research Age: 50–86 at home, and 85,3% Andras, their acceptability sors in a Parkin- and free-text re- PD) (using body-worn facility years (mean 69 to wear it in public. Walker to patients. sons disease sponses after bilateral wrist-worn and at years) -The sensors looks 2016 population fol- use for 4 h in a sensors. home Gender not like it is well made United lowing assess- research facility reported. -The sensor is Kingdom (UK) ment after both and after 1 week Diagnosis: comfortable to wear [43] brief and pro- of continuously Parkinsons -The sensor does longed periods use at home. disease. not feel heavy on of wearing. Average my arm duration of PD: -The sensor is easy 10 years (2–26 to take on and off years) Appearance: Physical properties could be improved. Wearing in public varied from not covering it up, to not like it to be questioned. Usability and Comfort were both positive and negative. Georgsson, Patients’ To understand Questionnaire Care4Life, an At home A random Patients saw clear Staggers 2017 perceptions and patients’ and interactive short sample of 10 benefits in using the Sweden (Swe) experiences of a perceptions of semistructured messaging service patients technology, and had [44] mHealth diabetes (1) longer-term interviews after (SMS) diabetes self- participating in favorable behavioral self-management use of a specific exit from a 6- management system a larger RCT. disease outcomes system mHealth system month random- for patients. Patients Age: 50% were after using Care4Life. called Care4Life, ized controlled send in blood glu- 60–69 years Attitudes: (2) specific im- trial cose, blood pressure, Gender: 5 Positive overall provements weight, exercises and women and 5 system perception needed for Car- medication adher- men and general e4Life, and (3) ence values, and re- Diagnosis: Type perception. their needs for ceive reminders and 2 Diabetes Behavioral future diabetes advice about various outcomes: self-management aspects of their Positive reminder, disease. control and independence. Suggested improvements for behavioral support (highly individual): Information and disease related, and food and lifestyle related support. Gorst, Coates, “It’s sort of a To explore the Semistructured Small-sized telehealth At home A sample of 8 Four superordinate Armitage lifeline”: chronic beliefs and interviews with equipment allowing patients as part themes: 2016 obstructive perceptions of patients who the patient to attach of a larger study -perceiving benefits United pulmonary disease patients with had been using peripheral devices to recruiting of “being watched Kingdom (UK) patients’ chronic telehealth from take readings of their patients with over” as providing [39] experiences of obstructive 6 months up to vital signs, with the COPD and/or peace of mind home telehealth pulmonary 3 years, with a individual readings Chronic heart -learning about the disease (COPD) mean of 17 displayed on the failure. health condition and currently using months use. equipment. Larger Age: 58–84 the impacts on self- home telehealth sized telehealth years (mean 68 management and who are not equipment years) behaviour enrolled in a trial. additionally allowed Gender: 5 -active engagement patients to view their women and 3 in health service data in graphs and men provision and better charts. Diagnosis: access to health care Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 8 of 17

Table 3 Characteristics of articles included in the systematic review of studies exploring patient experiences with technology enabled care (n = 21), in alphabetic order (Continued) Authors/ Title Aim Design Technology explored Setting Sample, Summary of relevant Country including findings participants’ characteristics COPD - valuing the Average importance of in- duration of person care COPD: 9 years (4–18 years) Hanley, Ure, Experiences of To qualitatively Semistructured A validated electronic At home A sample of 25 Patients became Pagliari, patients and explore the interviews home blood pressure patients (20 more engaged in Sheikh, professionals experiences of within a RCT of (BP) monitor and from the the clinical McKinstry participating in the patients and BP mobile phone intervention management of 2013 HITS home blood professionals telemonitoring technology that arm and 5 from their condition. United pressure (BP) taking part in a in routine care. enabled the transfer control arm) The home Kingdom (UK) telemonitoring trial of BP of BP readings via Age: monitoring system [45] trial: a qualitative telemonitoring SMS to secure < 50 years: 5 provided better study. based in a usual website which was 50–59 years: 10 evidence for action, care setting, to accessible to the user 70+ years: 10 facilitating rapid identify what and their doctor and Gender: 10 tailoring of contributes to nurse, and also women and 15 medication. the effectiveness provided automated men The role of of the feedback to the Diagnosis: telemetry-enabled intervention, patient. The BP Hypertension home monitoring what limited its monitor linked to a was motivating, an effectiveness and mobile phone incentive to improve what may be wirelessly, via self-care and evi- required for Bluetooth. dence which facili- success of the tated meaningful trial to be conversation and translated into dialogue with routine care. professionals. Jalil, Myers, Complementing a To investigate Semi structured A tablet computer, an At home A sample of 9 Two themes were Atkinson, clinical trial with how to discover interviews and automatic patients identified: Soden human-computer patients’ user survey within a glucometer, and an Age: 52–74 (1) the current 2019 interaction: Pa- experiences in RCT. automatic years (mean 62 design and how Australia (AU) tients’ user experi- telehealth, sphygmomanometer years) that fits with the [46] ences with eHealth, and Gender: 4 patients’ needs telehealth mHealth in a women and 5 -Lack of wireless clinical trial men capability Diagnosis: Type -Undesirable 2 diabetes experience from mellitus for at sphygmomanometer least 12 months. -Lack of visual data -Lack of medication name - Mismatch with life due to immobility of the device - Glucometer discomfort and pain (2) the patients experience of using the device depicted through their feelings and perceptions -Motivation -Build a habit -Awareness -Feel safe -Reduced doctor visits -Frustrations -Difficulty in measurement of Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 9 of 17

Table 3 Characteristics of articles included in the systematic review of studies exploring patient experiences with technology enabled care (n = 21), in alphabetic order (Continued) Authors/ Title Aim Design Technology explored Setting Sample, Summary of relevant Country including findings participants’ characteristics blood pressure Jamison, Mei, Longitudinal trial To determine the A longitudinal An app to assess, At home A sample of 90 The app was easy to Ross 2018 of a smartphone long-term effects 6-month trial monitor and patients with use. USA pain application for of using a smart- using a ques- communicate chronic pain Those who used the (US) [47] chronic pain phone pain app tionnaire at patients’ status to Age: 18–79 app more often patients: Predictors that allows three and six their providers. years (mean 47 were more satisfied of compliance and chronic pain pa- months. Included an activity years) with the program. satisfaction tients to assess, monitor and a Fitbit Gender: 58 Satisfaction ratings monitor, and to track daily activity. women and 32 diminished over communicate men time. Greater use of their condition to Diagnosis: the app and their physicians Cancer and frequent daily and that offers noncancer- assessment entries pain manage- related chronic were found to be ment strategies pain for longer related to an overall for users. than six months improvement in mood, but did not have a positive effect on pain or activity. Those who were more satisfied with the app reported more pain- related disability and were less active. Kardas, Type 2 diabetes To assess A 6 weeks RCT COMMODITY12 At home A sample of 60 All telehealth system Lewandowski, patients benefit patients’ using a system, composed of patients (30 dimensions reached Bromuri 2016 from the assessment of questionnaire at smart phone, and from the active mean values of Poland (PL) COMODITY12 their experience endpoint wireless connected arm and 30 above four in a five- [38] mHealth system: with sensors: from the point scale, with Results of a COMMODITY12 -A Bluetooth-enabled control arm) maximum values for randomised trial. system use glucometer, blood Age: Mean 59 clearness of instruc- within 6 weeks’ pressure reader and years tions, and ease of long clinical trial scale Gender: 24 use (4.80 and 4.63 in DM2 patients- -A Bluetooth-enabled women and 36 respectively), the sensor of ECG, heart men followed by general “COMMODITY12” rhythm, and respira- Diagnosis: assessment, reliabil- trial. tory movements Diabetes type 2 ity of results and -A triaxial for at least six time spent on sys- accelerometer – months prior to tem use daily. Sys- already built in the study tems users asked for SmartHub (mobile its strengths said phone) system being fast, -MEMS™ - a patient enabled them sys- adherence monitor, tematic self- which has been used monitoring and was to assess patient easy to use. adherence with oral Weaknesses were antidiabetic agents frequent need to they were using recharge and problems with glucometer strips. Knudsen, Experience of To explore Interviews after Monitoring At home A sample of 7 Patients valued the Laustsen, cardiac tele- patients’ a 12-week equipment with a patients. cardiac tele- Petersen, rehabilitation: ana- experiences of hospital-based heart rate monitor Age: 46–70 rehabilitation be- Hjortdal, lysis of patient tele-rehabilitation rehabilitation in with a sensor device, years (mean 58 cause it was not re- Angel 2019 narratives and the per- an outpatient blood pressure years) stricted to the Denmark (DK) ceived gains of setting (phase II) monitor, weight scale, Gender: 7 men hospital setting. [48] taking part in the smartphone with Diagnosis: Flexibility was as- program built-in alarm and Ischemic heart sumed as an advan- website. disease or tage. If activities Information undergone were part of their Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 10 of 17

Table 3 Characteristics of articles included in the systematic review of studies exploring patient experiences with technology enabled care (n = 21), in alphabetic order (Continued) Authors/ Title Aim Design Technology explored Setting Sample, Summary of relevant Country including findings participants’ characteristics transferred from heart valve daily lives, it lead to smartphone to a surgery greater acknow- website. The patients ledgement and and healthcare commitment to the professionals had program. If not, the access to shared data program was experi- on website. enced as an extra challenge. Lee, Patients’ To explore Semi-structured Telehealth to monitor At home A sample of 10 Three themes for Greenfield, perception of patients’ interviews with blood glucose, blood patients. facilitating positive Pappas 2018 using telehealth for perceptions of patients who pressure and weight. Age: 49–77 patient experience United type 2 diabetes using telehealth had used years (mean 63 or acceptance of Kingdom (UK) management: a for type 2 telehealth from years) telehealth: [49] phenomenological diabetes 1.5 years to 3.5 Gender: 8 Technology study management years. women and 2 consideration men -Initial perception of Diagnosis: Type using technology for 2 diabetes for 4 self-management to 33 years, -Telehealth usability mean time of concerns 15.4 years. Service perceptions -Sense of security and comfort -Easy and convenience access to healthcare services -Privacy concerns -Continuity of care Empowerment -Patient education -Supporting self-care with telehealth system’s health trend analysis Maglalang, “I don’t have to To access the A pilot PilAm Go4Health At home A sample of 45 Four major themes Yoo, Ursua, explain, people acceptability and randomized program. A culturally patients (22 were identified: Villanueva, understand”: cultural relevance control trial adapted mobile from -Culturally tailored Chesla, acceptability and of the PilAm using semi- weigth-loss lifestyle intervention support enhanced Bender 2017 cultural relevance Go4Health structured post- intervention including group and 23 engagement USA of a mobile health program program indi- virtual social network- from an active -Mobile technology (US) [50] lifestyle vidual interviews ing. Included using a wait-list control promoted personal intervention for after 3-months Fitbit accelerometer, group). agency Filipinos with Type intervention and self-reporting of food/ Age: Mean 58 -Progression from 2 Diabetes 3-months calorie intake and years despair to self- maintenance. weight using the Fit- Gender: 28 efficacy bit diary app, and par- women and 17 -Further cultural ticipate in a private men tailoring addressing Facebook group. Diagnosis: Non- support mechanisms insulin and improved site dependent accessibility were Type 2 Diabetes suggested to improve intervention acceptability. Maguire, Development of a To (a) explore A repeated- The Advanced At home A sample of 16 Only rarely did Ream, novel remote the feasibility measures, Symptom patients. patients report Richardson, patient monitoring and acceptability single-arm, Management System- Age: 42–85 problems in using Connaghan, system: the of the Advanced mixed-methods R (ASyMS-R) enables years (mean 64 the handset. They Johnston, advanced Symptom study design in- real-time collection of years) felt that the system Kotronoulas, symptom Management volving post- PROM data as a mo- Gender: 11 covered all relevant Pedersen, management System in study semi- bile phone–based women and 5 symptoms, helped Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 11 of 17

Table 3 Characteristics of articles included in the systematic review of studies exploring patient experiences with technology enabled care (n = 21), in alphabetic order (Continued) Authors/ Title Aim Design Technology explored Setting Sample, Summary of relevant Country including findings participants’ characteristics McPhelim, system for patients with structured inter- symptom monitoring men them manage the Pattison, radiotherapy to lung cancer views and system. Patients re- Diagnosis: Lung symptoms and Smith, improve the receiving semis-structured ceived self-care ad- cancer receiving effectively Webster, symptom radiotherapy and questionnaires vice on their mobile radiotherapy communicate with Taylor, experience of clinicians at baseline and phone or alerts were clinicians. Kearney 2015 patients with lung involved in their end of generated to a pager United cancer receiving care and (b) treatment. held by a health pro- Kingdom (UK) radiotherapy. assess changes in fessional at the clin- [15] patient ical site when outcomes during symptoms were of implementation clinical concern. of the Advanced Symptom Management System with patients with lung cancer receiving radiotherapy in clinical practice Minatodani, Home telehealth: To evaluate Mixed methods Remote technology At home A sample of 33 Receiving efficient Chao, Berman facilitators, barriers, patients’ approach using to self-monitor the patients feedback from RCT. 2013 and impact of perceived semistructured health (physiological Age: 37–87 Were better able to USA (US) [51] nurse support effectiveness of interviews as measurements and years (mean 60 identify changes in among high-risk and satisfaction part of a RCT answering 10 subject- years) their health status. dialysis patients. with home ive health questions Gender: 13 Experienced telehealth self- specific to end-stage women and 20 enhanced monitoring and renal disease and dia- men accountability, self- remote care lysis treatment) at Diagnosis: End efficacy and motiv- nurse (RCN) sup- home. stage renal ation to make health port and to iden- disease and behaviour changes. tify perceived dialysis The most frequently facilitators and treatment cited barriers related barriers encoun- to malfunctioning tered with RT equipment or use. trouble with Internet connections, forgetfulness, and felling poorly. Nordin, It’s about me: To explore Semistructured Behavior Change At home A consecutively One theme: It’s Michaelson, patients’ patients’ interviews with Program for Activity sample of 19 about me with 4 Eriksson, Gard experiences of experiences of open-ended in combination with patients at their categories: 2017 patient patient questions as multimodal 4-month follow- -take part in a Sweden (Swe) participation in the participation in a part of a RCT. rehabilitation (Web- up of the RCT. flexible framework [52] web behavior Web Behavior BCPA). An eHealth Age: 27–60 of own priority change program Change Program solution for a years (Mean 45 -acquire knowledge for activity in for Activity (Web- biopsychosocial years) and insights combination with BCPA) in treatment of Gender: 15 - ways towards multimodal pain combination persistent women and 4 change rehabilitation with multimodal musculoskeletal pain. men - personal and rehabilitation The modules Diagnosis: environmental (MMR) in primary contained Persistent conditions health care information, musculoskeletal influencing assignments, pain with a participation exercises, educational duration of at texts, videos and least three writing tasks. months in the back, neck, shoulder and/or generalized pain. Reeder, Older adults’ To examine the A survey after 9 The MD.2 medication At home A sample of 96 Nearly all patients Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 12 of 17

Table 3 Characteristics of articles included in the systematic review of studies exploring patient experiences with technology enabled care (n = 21), in alphabetic order (Continued) Authors/ Title Aim Design Technology explored Setting Sample, Summary of relevant Country including findings participants’ characteristics Demiris, satisfaction with a level of frail older months as part dispensing machine patients perceived the Marek 2013 medication adults’ of a prospective, automatically Age: mean 80 medication USA (US) [53] dispensing device satisfaction with longitudinal, dispenses pre-loaded years dispensing device as in home care. medication three-arm RCT medication and gives Gender: 63 very easy to use, dispensing conducted over alerts to individuals women and 33 very reliable, helpful device and a one-year about medication men in the management assess perceived period times. Diagnoses: of their medications, usefulness of the Chronic gave them peace of device by older conditions mind, and they adult home care present would like to use patients. including the machine in the diabetes, future. depression, COPD, dementia and heart disease. Vatnøy, Telemedicine to To investigate Individual semi- The technological At home A convenient Two themes and 5 Thygesen, support coping how the patients structured inter- solution consisted of sample of 10 categories: Dale 2017 resources in home- experienced views after a 1)a tablet with a patients The TM solution was Norway (NO) living patients di- follow-up using a duration of 10 video camera and discharged to experienced as [54] agnosed with TM intervention, to 21 days of pulse oximetry device their homes comprehensible and chronic obstructive and the extent to use. for daily monitoring after manageable and pulmonary disease: which it sup- of pulse and oxygen hospitalization. provided meaning patients’ ported and im- saturation transmitted Age: 55–83 in daily life. experiences proved coping wirelessly to the years (mean 65 -Handling and resources and tablet application, 2) years) understanding the independence. software consisting of Gender: 3 technology a questionnaire to women and 7 -Feelings related to measure subjective men technology use symptoms, 3) a Diagnosis: The TM solution questionnaire for COPD intervention symptom self- exacerbation contributes to stress evaluation The follow- reduction caused by up included nurse illness burden and with real-time follow- facilitates living as up video normally as possible communication -Confidence and trust in the health service -Impact on independence and self-management -Integrity and meaning in life Wall, Ward, Examining user To explore A mixed An electronic app A sample of 15 Patients felt Cartmill, Hill, perceptions of patients’ methods hosted on a secure patients comfortable, Porceddu SwallowIT: a pilot perceptions of approach using external server and Age: 46–70 confident, 2017 study of a new SwallowIT and structured provided on a tablet. years (mean 59 motivated, Australia (AU) telepractice the delivery of questionnaire at The system was years) supported, and that [55] application for preventive baseline and on designed to assist Gender: 15 men the method was delivering intensive swallowing completion of patients to complete Diagnosis: effective. swallowing therapy therapy during CRT and semi- independent home- Oropharyngeal Few technical to head and neck CRT via an structured practice of preventa- squamous cell difficulties, and cancer patients asynchronous phone –inter- tive swallowing exer- carcinoma (SCC) would not prefer telepractice views at 3–12 cises during CRT, and planned for face-to-face consult- model. months post- included instructional curative-intent ation in hospital. CRT. videos, images and chemo- Themes identified text. Free text for radiotherapy were: communication be- -“It was really easy tween patient and to use” (design, speech pathologist. system inclusions, convenience) -“You’re motivated Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 13 of 17

initiative. Their acceptance of telemonitoring appeared Empowerment also reduced frustrations related to techno- to be a consequence of patients’ understanding of fluctua- logical features [58, 60]. tions in their physical well-being. Telemonitoring further COPD patients reported that the telehealth equipment enabled symptom awareness and interpretation of these lead to active engagement in health service provision symptoms [40]. Patients used words such as «motivation», and better access to healthcare [39]. Patient reports from «accountability», «habit», «comfort» and «awareness», in- an e-Health solution for a biopsychosocial treatment of dicating that patients felt more empowered through tech- persistent musculoskeletal pain showed that patients felt nology enabled care solutions [46, 49, 51, 55, 58, 59]. that the solution was «about me», and allowed them to Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 14 of 17

take part in a flexible framework of own priority [52]. A homes. Many countries struggle to stimulate study on telemonitoring in motor neuron disease found digitalization and the adoption of digital services to im- that patients emphasized the benefits of timely interven- prove health system performance, and to evaluate tion, reducing unnecessary actions and doctors’ visits whether it actually improves health care. It is claimed [40]. that the results of digital transformation of health ser- Several studies emphasized the importance of patient vices will depend on the quality of the process, and the participation, understood as taking part in a structured involved stakeholders [63]. and flexible concept with opportunities to influence and The European Commision emphasize that further re- a variety of treatments to choose according to one’s own search is needed to evaluate digital health services’ po- needs and priorities. A reasoning process between health tential to strengthen patient empowerment and care professionals, e.g. reading and documenting in the provision of a basis for shared decision-making. More- patient records was perceived as patient participation over, the Commision claim that there is insufficient data [39, 45, 52]. As an example, cardiac telerehabilitation readily available to systematically assess the value of was valued due to the flexibility, and that healthcare ser- digital services [63]. This integrative review indicate that vices were not restricted to the hospital setting. When patients experience an evolving independence, due to activities were part of the patients’ daily lives, it lead to empowerment, autonomy and security from using TEC. greater acknowledgement and commitment to the pro- Studies have documented feasibility and high patient gram. Otherwise, the program was experienced as an adherence and satisfaction, but little evidence have been extra challenge [48]. presented on impact on health outcomes [64, 65]. Find- Timely interventions were perceived as a result of ings in this integrative review show that studies focusing regular monitoring of clinical information, contributing on ‘satisfaction’ most freequently use survey as method. to both physical and psychological well-being. Partici- In the studies included, most patients reported to be pants appreciated their data being monitored by profes- ‘satisfied’ with the technology. For example, one study sionals who would make timely actions if they saw any showed that 67% of the participants (n = 124) were very irregular signs [40]. Technology enabled care solutions satisfied, and 93% reported that they were willing to re- lead to a feeling of security, continuity of care, stress re- ceive home telecare services in the future [57]. duction, integrity, meaning and reassurance [41, 45, 49, This integrative review shows that patient experiences 54, 57, 61]. For example, COPD patients perceived bene- increased empowerment through technology enabled fits of “being watched over” as providing peace of mind care solutions. There is still no agreement regarding the [39]. elements that define patient empowerment. A recent review of the issue found 17 different definitions and de- Discussion scribed ten possible dimensions in empowerment [66]. In this integrative review, 4098 journal articles were Examples were patient participation in clinical decision- screened, and 21 articles were included which explored making, gaining control, motivation and knowledge ac- patients’ experiences with technology enabled care solu- quisition [66]. A recent study highlight the perception of tions. The integrative analysis showed that patients’ ex- direct control on their treatment as the least valued periences were divided into two main aspects; technical element (2.87, SD 0.566) compared with care quality features and evolving independence. Technical features (3.75, SD 0.649) and relational support in the care con- was linked to functionality and appearance, while evolv- text (3.91, SD 0.274) [67]. These dimensions coincide ing independence was linked to empowerment, auton- well with what patients experience as benefits of tech- omy and security. Technology enabled care encompass a nology enabled care solutions. variety of instruments and modes of application. The in- In the studies included in this integrative review the terventions may be provided as an alternative to, in mean age was 61.9 years. Moreover, age range was 18– addition to, and/or alongside traditional healthcare ser- 88. In the US, 86% of adults aged 65 or older suffer from vices [62]. This integrative review did not limit to year, one or more chronic health conditions [68]. The concept condition, disease (other than somatic), socio- of assisting the older adult through the use of technology demographics or study location. Hence, findings here so as to access healthcare services has been claimed to give an insight into patient experiences with technology have enormous potential [69]. In one study, younger age enabled care varying from telemonitoring to the use of was associated with greater technology use in health applications, across age, gender, socio-cultural or geo- care, as well as capacity to engage in different aspects of graphic settings or diseases. health care activities [70]. Hence, high age may have im- Even though we did not limit the search and inclusion pacted the findings in this study. criteria, all studies were conducted in patients receiving The successful implementation of innovative digital technology enabled treatment and/or care in their technology in healthcare services is a complex and time- Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 15 of 17

consuming process. Digital transformation of the health- understanding of patient experiences with digital health care services requires advanced IT competence to be in- solutions in a wide, somatic, healthcare approach [75]. tegrated directly into the provision of care and value co- One inclusion criteria was Scandinavian or English creation with service users; healthcare personnel, pa- language. This may have excluded potentially useful tients and their relatives [71]. It has been claimed that e- studies, yet there is evidence that limiting studies in this Health implementation only leads to sustainable adop- way does not introduce significant bias [76]. We did not tion when the implementation take into consideration, limit studies by year. This research area is evolving, and and aligns the e-Health content, with present contextual the number of publications has increased rapidly the last structures and the interventions in the implementation ten years. The first study in the literature search was process [72]. For example, the study on digital medicine from 1975, while the first included study undertaken dispensers showed that healthcare professionals’ per- quality appraisal and included was from 2008. The earli- sonal justification and rationale for such action is neces- est studies focused on telehealth initiatives. By not limit- sary, because their opinions and approval influence ing to year, we were able to explore studies in a wide, whether patients welcome this initiative or not [73]. retrospective perspective, ensuring that we did not over- Earlier studies focus on specific conditions, TECs, or see any publications of interest. healthcare levels. Findings in this study adds knowledge In this integrative review we assess patients’ experi- about patients’ experiences with a variety of TECs, ences. Of course, relatives’ and healthcare personnel’s across healthcare service levels and irrespective of pa- experiences would have given more in-depth knowledge tients’ condition. Since patient experiences’ provide on different stakeholders’ experiences with specific tech- more tangible information on how a service can be im- nology or digital solutions, which also may impact pa- proved, and is less to prone to the influence of patient tients’ experiences in total. expectation [26–29], this information is important to in- Scholars have debated whether research synthesis dif- clude when developing and implementing TECs in the ferences characterizing efforts to integrate qualitative re- future. search findings with the differences characterizing efforts to integrate quantitative research findings pre- clude mixed research synthesis [31]. Sandelowski et al. Strengths and limitations [31] claim that both qualitative and quantitative studies The strength of this integrative review is that it is based can be viewed as producing findings that can readily be on close collaboration with a specialized librarian who transformed into each other. Aiming to explore patients’ assisted in setting up search strategies, combinations and experiences, we think that quantitative data as much as boolean operators. Moreover, screening of titles, ab- qualitative data adds to this knowledge. stracts and full-text of the records, quality appraisals, as well as the analysis, were conducted in close collabor- Conclusion ation between the four authors. Any disagreements were This integrative review deepens the understanding of pa- discussed until consensus was reached. This process in- tients’ experiences with technology enabled care solu- creases the validity and reliability of this systematic tions. Findings indicate that patients’ experiences not review. only relate to the practical or technical element of the The integrative review has several possible limitations. device or solution, but to how this impact on their Firstly, we could have found more studies if we had everyday life. Technology enabled care will probably be searched in more databases. Nevertheless, the selected an imperative part of a comprehensive patient pathway databases are the largest and most relevant for this spe- in future healthcare services. Patient participation in de- cific research field and aim. Secondly, we limited our in- velopment, implementation and utilization of such solu- ‘ ’ clusion of articles to those of high quality , which may tions should be considered an integral part in healthcare have excluded articles that could have added interesting quality initiatives. information about patient experiences. In addition, we could have included qualitative articles Supplementary information only, since qualitative approaches are more sufficient Supplementary information accompanies this paper at https://doi.org/10. when aiming to explore experiences and perspectives 1186/s12913-020-05633-4. [74]. Nevertheless, the quantitative studies mainly added information about positive and/or negative experiences, Additional file 1. while the qualitative studies added in-depth information about challenges. Several of the studies used mixed- Abbreviations CASP: The Critical Appraisal Skills Program (CASP); PRISMA: Preferred methods approaches, arguing the same. An integrative Reporting Items for Systematic Reviews and Meta-Analyses guidelines; review method allows for a more comprehensive TEC: Technology enabled care Leonardsen et al. BMC Health Services Research (2020) 20:779 Page 16 of 17

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