medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 1 Evaluation of experiences and attitudes of patients 2 towards patient portal enabled access to their health 3 information or medical records – A Qualitative Study 4 Preksha Machaiya Kuppanda1*, Judy Jenkins1 5 1 6 *Email: prekshamachaiya@gmail.com (PMK) j.jenkins@swansea.ac.uk (JJ) Swansea University Medical School Swansea, SA2 6PP Wales, United Kingdom 7 8 9 10 11 12 13 14 15 16 17 18 19 NOTE: This preprint reports new research that has not been certified by peer review and should not be used to guide clinical practice. Page | 1 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 20 Abstract 21 The demand for patient centred care and patient engagement in their healthcare has driven 22 patient portal introduction. The widespread adoption and use of patient portals, however, 23 has been a rather slow process in the United Kingdom (UK). Hence, a limited number of 24 studies have explored patient perceptions and experiences of general portal use which forms 25 a foundation for successful implementation of a portal. This study, therefore, focuses on the 26 experiences and attitudes of patients regarding use of patient portals and access to their 27 health information. It further explores various factors perceived by patients that may 28 influence portal use and uptake. These patient experiences were gathered through semi- 29 structured interviews of 13 participants and the data collected was subjected to analysis 30 using the grounded theory approach. The overall findings from this study highlights positive 31 patient perceptions of portal use. Nevertheless, it demonstrates various areas of 32 improvement essential to ensure successful implementation and acceptance of patient 33 portals in the future. 34 35 Authors summary 36 Patient portals have become a globally popular tool used in the healthcare sector due to its 37 potential to increase patient engagement which is considered essential to provide patient 38 centred care. Similarly, the use of patient portals in the UK has increased, with different 39 providers making this service available to patients. Patients are the key target users of patient 40 portals, however, there is limited research that focuses on understanding patients’ 41 perspective of using a patient portal and accessing their health information. The majority of 42 the existing studies have either evaluated providers or healthcare professionals’ perspective Page | 2 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 43 of patient portal implementation or explored patient experiences of using patient portal 44 tailored to cater individuals with specific health conditions. Therefore, our aim was to 45 explore patients’ perception of patient portals and their experiences of accessing their health 46 information or medical records through one. Our research has captured various factors that 47 has influenced portal use among patients and the impact of health information access on 48 patients and their care process. Additionally, it has identified scope for future development 49 and discussed factors that could potentially improve patient portal implementation and drive 50 portal use and uptake among patients. 51 52 Introduction 53 There is an increased demand for patient centered care and patient engagement. This has 54 resulted in a demand by both providers and patients to increase the role of consumers in their 55 healthcare and decision making [1]. This and several social and human factors like 56 healthcare expenditure, demand for home-based care, and lack of an adequate number of 57 medical workers have led to the active implementation of patient portals [1]. Patient portals 58 are tools that allow patients to access their health information and medical records [2-4]. 59 These are services that are managed by a provider and are linked to a patient’s electronic 60 health record [5, 6]. It allows patients to enter or retrieve their health information, therefore 61 increasing patient participation [5, 7]. Patient participation in turn has the potential to 62 improve care outcomes [5, 8]. 63 Patient Access and myGP are patient portals used by some surgeries in the United Kingdom 64 (UK) which provide patients with features like appointment booking, ordering repeat 65 prescriptions, messaging, and viewing medical records [9, 10]. The NHS app is a more 66 recent service in the country and has functions similar to the Patient Access portal while Page | 3 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 67 supporting additional features like the mandatory COVID-19 vaccination proof, setting 68 organ donation preference, and checking symptoms [11, 12]. However, uptake of patient 69 portal services, access to medical records and linked services in the UK is limited and its 70 widespread incorporation has been a slower process compared to many first world countries 71 [9]. 72 Many studies associated with patient portals have included both portals and personal health 73 records interchangeably in their study, although they vary in terms of their ownership and 74 features [6, 13]. This has led to a failure in drawing clear differentiation between patient 75 portals and personal health records while concluding findings [6]. Additionally, although 76 patient portals are developed to increase patient engagement in their healthcare, there is a 77 lack of importance given to understanding their experiences and expectations of using a 78 portal [7]. The majority of studies have either focused on practitioners or providers 79 perspectives of the impact of patient portal implementation [14] or have evaluated the impact 80 of disease-specific or vendor-specific portals [9, 15]. The successful implementation of a 81 patient portal however requires that experiences of all stakeholders, including those of 82 patients using varying portal services be evaluated [14]. This study, therefore, aims to assess 83 the experiences and attitudes of patients in the UK towards patient portal enabled 84 engagement, access to medical records and linked information, and involvement in their care 85 process. Page | 4 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 86 87 Methods 88 Methodology 89 A qualitative study was conducted to evaluate the experiences of patients towards patient 90 portal enabled engagement with their medical records and health information. A qualitative 91 method was used as it aids in generating in-depth information of patient experiences by 92 allowing patients to explain their perceptions in their own words rather than subjecting them 93 to provide limited answers through a survey or structured questionnaire [16]. 94 Study design 95 Participants and recruitment 96 Adult (> 18 years old), UK Resident, and English-speaking users of either the ‘myGP’, 97 ‘Patient Access’ or ‘NHS App’, with access to their health records or health information 98 were targeted. Recruitment was initiated by posting an advert containing brief details of the 99 study on various social media platforms and discussion forums. Interested participants were 100 asked to contact the researcher by either emailing or filling an expression of interest 101 registration form. An email containing the participant information sheet and the consent 102 form was sent to the registered individuals who met the inclusion criteria (n=24). Individuals 103 who consented (n=15) were further invited for a Zoom interview. 15 participants were 104 interviewed at their convenience and 13 were included in the study (2 were excluded as they 105 subsequently failed to meet the inclusion criteria). 106 Data collection 107 The information was gathered by conducting semi-structured interviews. A semi-structured Page | 5 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 108 interview was chosen as research states that it is the most suitable method for exploring 109 experiences and perceptions, as it involves asking open ended questions and its flexibility 110 allows building rapport with the participant [17]. The semi-structured interview was based 111 on the study aim and existing literature on patient portals. The interview guide was 112 developed based on the guidance provided in a study [18] and comprised general questions 113 regarding the topic to aid participants to adapt to the context of the interview. It was then 114 followed by core questions exploring the key aim of the research and supported by follow- 115 up questions where necessary [18]. The interview was conducted via Zoom due to its ease 116 of use, cost-effectiveness, security, data storage features, and the requirement to maintain 117 social distancing in effect at the time of the research. [19]. 118 Data analysis 119 The interviews were manually transcribed by the researcher, and the data were analysed 120 using Grounded Theory (GT), as it has an inductive nature that allows for greater 121 interpretation of healthcare experiences [20]. The constructivist GT approach was employed 122 as it allows the researcher to engage in the creation of theories and therefore strikes a balance 123 between participants and the researchers views in the findings [21]. Additionally, it provides 124 the researcher with the ability to generate novel and comprehensive theories while 125 maintaining the originality of the data collected [21, 22]. 126 The constructivist grounded theory method comprises initial coding followed by focused 127 coding and theoretical coding, respectively [23]. Line by line coding was employed for the 128 initial coding of data as it provides more scope for critical evaluation of data and therefore 129 aids in the generation of many questions to explore new concepts [24]. During the coding 130 process, in-vivo codes comprising specific terms used by participants were used to preserve 131 the meaning conveyed by participants. This is identified as an essential component of Page | 6 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 132 constructivist GT to prevent bias or extensive incorporation of the researcher’s perceptions 133 and feelings into the participant data [24, 25]. 134 Ethical considerations 135 This study was approved by the Swansea University Medical School Research Ethics and 136 Governance Committee (SUMS RESC project ref number 2021-0065). 137 Results 138 Theme 1: Patient portal and patient interaction 139 Portal service 140 An equal number of participants used the Patient Access and the NHS App respectively. 141 Some had access to both the services. Participants who used Patient Access had the service 142 for more than a year. Whereas a majority had registered with the NHS portal only in the past 143 6 months. The use of the NHS App was mostly driven by the need to retrieve COVID-19 144 vaccination proof. For example, patients stated “The NHS app, [used] only recently since I 145 heard about its introduction for the travel pass primarily” (P10), and “I've only had the NHS 146 app since COVID” (P07). 147 Portal features 148 A broad range of features were available to participants (patients) via patient portals. These 149 features included ordering repeat prescriptions, booking appointments, and accessing 150 medical information like health records, test reports, consultations, immunisation, and 151 medical history. The features available were different for participants using different portal 152 services and varied depending on the surgery. Participants highlighted this variation and one 153 stated, “In this [NHS App] also you can see consultation, but I did not see much Page | 7 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 154 detail [compared to another portal service]” (P10). Another added, “I think I’m supposed to 155 be able to book appointments with my GP [General Practitioner] but I actually can’t...I think 156 our GP just doesn’t use that function” (P08). 157 Additionally, the commonly used features varied among participants. A participant 158 stated, “For patient access, the main things I used for were appointment booking at my GP” 159 (P07), whereas another said, “The patient access I use it mainly for the repeat prescription 160 and for sending requests [medication]” (P12). 161 Participants displayed poor awareness of all the features available to them through the 162 portal, some highlighted this by stating “I can’t remember which all features it has but the 163 main reason I use it is to order my prescription every few months due to a medical condition” 164 (P03), and “I can look at repeat prescriptions but…because I haven’t had anything 165 prescribed for a really long time, so I’m not as aware of that as a function” (P08), 166 respectively. 167 Patients' portal experience 168 Participant perceptions of patient portals were unanimously positive. They expressed that 169 the portal made health services and information access automated, easy, efficient, and 170 immediate. Additionally, they described patient portals as a means to minimise elaborate 171 conversations and unnecessary interactions with healthcare staff. One stated that “its’s 172 [patient portal] brilliant, because If I can get away with not having to ring my doctor surgery, 173 then that is an absolute bonus for me” (P14). Another reported, “it [using the portal] was 174 the best experience I've had of trying to deal with the GP and manage medicine and stuff 175 like that” (P08). Page | 8 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 176 Theme 2: Factors influencing patient portal use 177 General Practitioner (GP) recommendation and patient choice 178 In most cases, patient portals were recommended to participants by their GP for use of 179 specific functionalities like appointment booking or medication refills. One stated “it was 180 then suggested [by the surgery] to make appointments” (P10). Although, participants 181 became aware of the service from recommendation by the GP surgery, the majority voiced 182 that ultimately it was their independent choice to register to the service, by expressing 183 “ I was happy to like use apps all the time so I was familiar so I would have probably chosen 184 that 185 independent choice and no one forced me to use” (P01), respectively. Additionally, 186 participants added that the use of the service did not feel obligatory as the conventional mode 187 of access were still available and one stated, “it didn’t seem like I was being forced to [use 188 the service] by my surgery or anything like that. So, I am still aware that there are telephone 189 services available for people who may not have a smartphone or not want to use the app for 190 whatever reason” (P09). However, some participants explained that they had no choice or 191 limited choice of services to choose from, and one stated “my GP surgery only used the 192 Patient Access app...so there was no choice, and the NHS app is the only app that gives you 193 access to your results and the COVID pass so there was no choice. I had to get both” (P03). 194 Perceived benefits and information need 195 Participants’ realisation of the potential benefits of the service aided their portal uptake and 196 use. They recognised the ability of patient portals to enhance the speed and efficiency of 197 their healthcare processes. They identified that portals enabled having all the services 198 presented to them at their fingertips, thereby, making access available to them at their even though my GP hadn't suggested it” (P07), and “it was my Page | 9 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 199 convenience and out of GP working hours. One mentioned, “it’s [portal] a good deal, better 200 than holding on for an hour or more trying to get through to the receptionist” (P05). 201 Additionally, increased healthcare and information needs motivated use, this was evident 202 from participants statements like, “I was very much like wanting to know as soon as possible 203 when the results came in, so that was sort of what spurred it [use] initially…I would say, I 204 don’t use it often but if something is wrong with me at a particular time then I’ll be using it 205 again” (P08). 206 Pandemic and digital shift 207 With the COVID-19 pandemic and several healthcare services moving online, portal use, 208 specifically the use of the NHS App among participants increased. One participant 209 emphasised that “It [portal use] is partly to do with the pandemic…was trying to get all the 210 information because in a pandemic it makes you realise that I need to sort out and make 211 sure that all my healthcare is okay” (P02). Another added, “the NHS App gives you 212 the option to have a vaccine passport, so that’s automatically a reason to use something like 213 that” (P14). 214 Theme 3: Patient portal enabled heath information access and 215 its impact 216 Patient emotions 217 Participants had a positive experience of accessing their health records, test reports, and 218 other health information via portal services. They were pleased to have this service available 219 through their portal. Initial access to their health information spurred feelings of keen interest 220 and curiosity among the participants. These emotions further developed to feeling informed, Page | 10 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 221 reassured, in control, less dependent, and more confident. A participant stated “I think it is 222 more interesting really. There was nothing, in particular, I wanted to look up” (P05), and 223 another added, “I suppose it was quite freeing in a way or like it gives you a degree of 224 independence from the doctors” (P08). Alternatively, there were also feelings of shock and 225 surprise among some participants after viewing old and forgotten health information and 226 one expressed “I really liked it, it was quite interesting and it's quite surprising, it's a bit 227 strange seeing everything you've had wrong with you in the list and it's quite daunting” 228 (P08). 229 Healthcare process 230 A majority of the participants expressed that portal enabled access to health information and 231 records had a positive impact on their healthcare process, while some stated that it made 232 little or no significant difference to their care. One explained that “It’s not that just because 233 you can see your health information, disease or whatever condition, it doesn’t mean that 234 you then become aware of your health…I would say it hasn’t made any difference by having 235 access” (P10). Many participants highlighted that access to their health information made 236 them newly aware of their medical history or allowed them to recall forgotten health 237 information, with one mentioning “long time ago I had an allergy to penicillin, that was 238 recorded which I myself had forgotten” (P13). Additionally, access to health records allowed 239 patients to easily compare and identify previous treatments that have worked. It further 240 helped by bridging any communication gaps and language barriers and enabled patients to 241 be more proactive, involve in shared decision making, and make informed healthcare 242 choices. One participant stated “Some of the things the doctors said I didn’t fully understand. 243 But with the app, I can look at it myself” (P12), a second added “I find that really 244 reassuring I’ve got the level same access level as they [doctors] do” (P14). Page | 11 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 245 Conventional versus portal supported health information access 246 While expressing how portal access made a difference from the conventional method of 247 receiving and accessing health information, participants emphasised that portal access is 248 comparatively faster, and serves immediate information needs. They highlighted that it 249 makes information access easier and meaningful with all health information available at one 250 place, thus, preventing scattering of health records and aiding the generation of longitudinal 251 health data. Additionally, participants appreciated the ability of the service to allow them to 252 access and interact with their health data at a time and place of their convenience. These 253 views are evident from participants stating, “It’s much more efficient, it’s much easier, it’s 254 quicker, it’s done in my time and in my speed at my convenience” (P05), “It’s more 255 convenient rather than getting updates from different places like mail messages or 256 whatever” (P01), and “Through the app, you can just access it on your own terms, no one is 257 trying to prompt you” (P02), respectively. 258 Patient perceived drawbacks 259 Participants identified varying threats of having access to health information and records via 260 their patient portal. Key concerns included an obsession of viewing records, and the potential 261 risk of self-diagnosis. One pointed that “I think having access to your own records will lead 262 to people jumping to wrong conclusions about their records, whereas on the other hand, it 263 might require them to see a GP but because you have access to your records you might be 264 less inclined” (P02). 265 Additionally, participants acknowledged data security and privacy issues. A significant 266 number, however, had little or no privacy concerns. This was due to their confidence in 267 either the service provided by the NHS, their devices security system, or both. Many Page | 12 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 268 believed that a strong password was key to ensuring data security. This was evident with 269 participants stating, “I have no concerns because…I think National Health is being quiet, 270 the data protection and all that, they take that, you know seriously (sic).” (P13), and “it’s 271 just a case of being able to make a good password” (P09). On the other hand, a few were 272 apprehensive of potential hacking but were willing to make trade-offs, either due to the 273 absence of confidential information present within their records or due to their perceived 274 benefits of patient portals. A participant expressed “I am not worried because I don’t think 275 there is anything on there that I am worried about anyone seeing or using it” (P02). 276 Theme 4: Patient portal adaptability and ease of use 277 Information interpretation 278 Most of the participants reported that the health information presented to them via their 279 portal was comprehensible and provided detailed information of their diagnosis or treatment. 280 Some believed that the interpretability of the information depended on the type of report, 281 and level of individuals medical knowledge. This was further reflected among participants 282 as they expressed that although they managed to understand the information presented, they 283 experienced some level of difficulty in interpreting the medical terms and stated that they 284 relied on colloquial and supported explanations to interpret the data. For example, a 285 participant stated, “I obviously don’t understand the medical term but if the word normal is 286 used that I will think that is okay” (P04). Many also mentioned relying on google and other 287 resources to research and understand complex information. 288 Technological literacy 289 None of the participants expressed having trouble in navigating through the given patient 290 portal, however, they voiced their concern regarding the limited accessibility of portals for Page | 13 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 291 the disabled and the older population with poor technological literacy. One participant 292 stated, “To me, I would say there are no downsides, but I can see that as a problem for 293 people who have no help, no knowledge of how to use the system” (P10), and another added, 294 “I think this [patient portal] is more towards the younger generation than the older ones” 295 (P13). 296 Theme 5: Expectations and future developments 297 Patient expectation 298 Several participants had no initial expectations from patient portals and accessing health 299 records, as they registered to the service out of curiosity or to use it specifically for repeat 300 prescriptions or appointment booking. A participant expressed “I had no expectation, to 301 begin with, I didn’t know what to expect so I think it has met my expectation” (P13), and 302 another stated, “At first, I was curious, and I’ve accessed some fairly old documents going 303 back to 1993… It was an interesting read, and I am glad I saw those letters” (P05). They 304 were fascinated to see various features, their health information, and medical history in their 305 patient portal. All participants considered the service reliable in general, but this perception 306 varied for different features. Additionally, one pointed that “it is still dependent on human 307 input, so it is as reliable as you consider a human” (P02), and another added that the service 308 reliability depended on the GP surgery providing it. Furthermore, some had suggestions for 309 future improvement. A participant emphasised this by stating “So far it has met my 310 expectations. Obviously going forward there is a lot of room for improvement” (P12). 311 Future developments 312 Some of the key suggestions of portal improvements among participants included obtaining 313 more information access via patient portals, and incorporation of additional features that can Page | 14 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 314 further aid their healthcare process. Many voiced the need for establishing consistency of 315 service and portal features offered across GP surgeries and increased promotion of portal 316 services to enhance portal use and adoption. These were explicitly stated by participants as 317 “I don’t understand why all GPs don’t use it. I think if all surgeries used it, it would be a lot 318 easier for people to understand because it would just be one process for everyone” (P07), 319 and “I did speak to a few of my friends and not many people seem to be using it [patient 320 portal], I don’t think it is heavily promoted. So, I think marketing a bit more” (P13). 321 322 Discussion 323 The participants in this study used the NHS App, Patient Access service, or both. None of 324 them used the myGP service: this could be due to poor promotion of the service in the 325 participants practice as highlighted in a study by Ryan et al [26] or due to promotion of 326 alternative services. A broad range of features were available to participants through the 327 NHS and the Patient Access portals, including ordering repeat prescriptions, booking 328 appointments, viewing medical records, test results, and accessing consultation documents. 329 However, the features available and used by each participant varied, depending on the portal 330 service used and their registered General Practitioner (GP) surgery. The variation of features 331 within the same portal service is due to the surgery being responsible for deciding what 332 portal services are accessible to their patients [27, 28]. Additionally, most of the participants 333 displayed poor awareness of various features within their patient portal, therefore, leading 334 to non-use. This results when there is a lack of communication and guidance provided to 335 patients by the providers [29, 30]. Patients are usually provided with details of setting up an 336 account and logging in, whereas information given on features is not elaborate [4]. Portal Page | 15 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 337 introduction must, therefore, be accompanied by adequate patient training and guidance to 338 enable effective use of the service [4]. 339 Majority of the participants in this study revealed that their GP recommended the respective 340 portal service, which is known to play a significant role in patient portal adoption and use 341 [7]. Although portal services were recommended, participants expressed having an open 342 choice to register for the service. Hence, their continued portal use was influenced by their 343 voluntary interest and perceived benefits of the service, which are considered as key factors 344 essential for long term use of a portal [31-33]. Additionally, the use of the NHS App among 345 participants was strongly influenced by its feature which allowed them to access their 346 COVID-19 vaccination proof. This outcome is in accordance with a study [29], which 347 highlights that in many cases patient portal use is a result of a reactive process to either a 348 policy or a process. 349 Overall, among the participants, booking appointments and ordering repeat prescriptions 350 were the most widely used features within a portal, whereas, accessing health records and 351 test results were a result of curiosity or response to the availability of the service. This is 352 consistent with previous research findings [9, 34]. Alternatively, studies by Rodriguez [35] 353 and Moll et al. [36] reported that accessing medical records and viewing test results were 354 the most used features of the portal. This difference in findings could be a result of varying 355 medical and health information needs among portal users. For example, in this study the 356 appreciation of the ability to access health records and information via a portal was directly 357 proportional to the healthcare needs of the participants. This finding is consistent with 358 previous studies which have noted that individuals’ health, discharge, and medication status 359 influence portal use [29,36-40]. Page | 16 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 360 Irrespective of their health status, participants had positive experiences of viewing their 361 health information, medical records, or test results. They reported feeling confident, in 362 control, aware, and informed of their health and care process. This response is consistent 363 with previous studies [34, 36, 41]. Furthermore, participants expressed feeling reassured by 364 being able to access information which earlier only their healthcare practitioners had access 365 to. Some also cited that portal access helped bridge language and communication barriers 366 with the providers. This equivalent access and enhanced information communication 367 prevent patients from feeling powerless and ignored [42], which in turn can aid in 368 safeguarding their emotional well-being which can otherwise be negatively influenced by 369 caring neglect [43]. 370 In addition to expressing these emotions, participants noted several benefits of accessing 371 their health information and records. They expressed becoming aware of their medical 372 history, and allergies which they previously had no knowledge of or had forgotten. This 373 awareness aids in ensuring patient safety by minimising the risk of patient allergies and 374 history being ignored during treatments [38]. Access to medical history further allowed 375 participants to compare different treatments, identify progress and patterns, and make 376 informed choices in their ongoing or upcoming care. A similar benefit was voiced in a study 377 by Fisher, Bhavnani, and Winfield [40]. 378 Furthermore, accessing health information and records via a portal was deemed easy, quick, 379 and efficient by the participants. They valued the ability of portals to make seeking 380 emergency medical assistance easier, with all necessary health information and history 381 easily accessible. Individuals travelling frequently considered this as one of the most 382 beneficial aspects of electronic access, since it allowed them to easily share health 383 information with different care providers and healthcare services. This in turn can enhance Page | 17 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 384 care coordination, save time and resources otherwise spent on conducting repetitive 385 consultations and tests [44]. Additionally, participants reported that electronic access to their 386 health information helped to keep them on track of their healthcare timeline by keeping them 387 up to date regarding their treatments, immunisation, medication, and therefore ensured 388 receiving medical attention when necessary. This outcome is useful as in most cases there 389 is a lack of clarity regarding who is responsible for test result dissemination, thereby 390 resulting in serious safety implications for patients due to the potential failure to follow up 391 [45]. 392 Participants in this study identified patient portals as more beneficial compared to the 393 conventional modes of accessing health information as they not only catered for their health 394 information needs but also provided multiple services. This could be one of the drivers to 395 portal use as a study [39] suggests that access to records alone is not viewed as a useful 396 service by patients but this feature supported by options like appointment booking, 397 messaging, and ordering prescription intrigued patients. Additionally, it allowed having all 398 resources and data in one place and prevented scattering of information. Participants further 399 emphasised their appreciation regarding the possibility of accessing information at a time 400 and pace suitable to them. Similar admiration is reflected among patients in a study by 401 Zanaboni et al [46]. Furthermore, participants were not very concerned regarding their 402 ability to interpret the health data presented to them. Although many reported difficulties in 403 understanding medical terminologies which is considered essential for interpreting medical 404 information [47], the ability to view their health information in accordance with their 405 convenience aided their data interpretation. Some reported looking up the internet and 406 researching as methods used to aid their interpretation. On the other hand, some responses 407 reflected that they did not make an effort to understand the information in depth, instead 408 referred to informal and simple terms to ensure the reports are normal. Page | 18 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 409 The majority of the participants displayed awareness regarding data privacy, but it was one 410 of the least expressed concerns. Among users of the NHS app, this response was majorly 411 due to trust in services provided by the NHS, therefore, suggesting the influence of product 412 branding which was demonstrated as one of the strengths of the NHS app by Beaney et al 413 [48]. The lack of concern was also influenced by participants perception of the level of 414 sensitivity of their medical information within their portal. On the other hand, some 415 participants were willing to make trade-offs. This aligns with findings of a study [49] which 416 noted that irrespective of their privacy concerns, patients are keen to use patient portals and 417 access their health information as they believe that the benefits of the service outweigh any 418 potential harm or drawbacks. 419 No participants in this study exhibited personal negative experiences of portal use. 420 Nevertheless, they expressed their concerns about how a portal could negatively impact a 421 certain set of people. The most expressed concern was, patient portals potential to stem 422 disparity by limiting access to old, disabled, and individuals with poor health and 423 technological literacy. This risk holds true in a study [31] that reported lower portal 424 acceptance among the older and vulnerable groups as a result of poor health literacy or 425 resistance to change. Alternatively, another study [50] identified that older adults registered 426 to one or more portals irrespective of their technological literacy, therefore, highlighting 427 their interest in using a portal. This suggests that increased provider encouragement, support, 428 and training can prevent these individuals from being alienated from the service [32, 51]. 429 Furthermore, there were concerns that access to health information and medical history via 430 patient portals might result in paranoia and obsession among some individuals. Similarly, 431 physicians in a study [52] expressed concern that access to health information could fuel 432 hypochondria among users. Page | 19 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 433 Despite these general concerns, the services offered by these portals met majority of the 434 participants expectations. The access to health information feature was beyond the initial 435 expectation of most of the participants. Nevertheless, many expressed keen interest in 436 obtaining more health information and details of their medical records. This demand is 437 persistent among patients across various studies [53-55], therefore, promising future success 438 of portal implementation and adoption. 439 440 Limitations 441 This study has some limitations. Firstly, this research explores the perception of patient 442 portal users only in the UK. This therefore could limit generalisability of these findings to 443 patient portal users on a global scale, as patient perceptions of portal use are strongly 444 influenced by service provider and product branding, which vary across geographical 445 boundaries. However, findings suggesting approaches to drive portal use, uptake, and health 446 information access by patients are generic and independent of the service provider and can, 447 thus be applied globally. Secondly, the process used to recruit participants through social 448 media adverts could have limited participation of individuals inactive on these platforms or 449 those with minimal access to the internet. Thirdly, some Zoom interviews were interrupted 450 by the individuals’ video conferencing set up which could have restricted them from 451 providing elaborate answers. The impact of these on the study results however are minimal, 452 as 13 participants which is considered as the minimum number required to achieve saturation 453 in an interview-based study were included [56]. Additionally, Zoom offered the advantage 454 of effectively accessing participants while managing the limited time and resources that were 455 available for the study. 456 Page | 20 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 457 Conclusion 458 Findings from this study contribute towards understanding patients’ experiences of 459 accessing health information through patient portals. It was evident from the findings that 460 portal use among patients is influenced by the service provider and portal features. Whereas 461 their perceptions of accessing health information are influenced by their health situation and 462 information needs. Although these perceptions were collectively positive, there is scope for 463 future development. A key area of improvement is the need for establishing consistency of 464 portal service offered across surgeries. This can aid familiarity and usability of the service, 465 therefore, avoiding confusion among patients. Additionally, there is a need for increasing 466 awareness of the service, its available features and providing patients with the necessary 467 support in the form of training and encouragement to enable uniform access and use. 468 References 469 1. Zarcadoolas C, Vaughon WL, Czaja SJ, Levy J, Rockoff ML. Consumers' 470 perceptions of patient-accessible electronic medical records. Journal of medical 471 Internet research. 2013;15(8):e168. 472 2. Nøst TH, Faxvaag A, Steinsbekk A. Participants’ views and experiences from setting 473 up a shared patient portal for primary and specialist health services-a qualitative 474 study. BMC Health Services Research. 2021 Dec;21(1):1-9. 475 3. Hoogenbosch B, Postma J, Janneke M, Tiemessen NA, van Delden JJ, van Os- 476 Medendorp H. Use and the users of a patient portal: cross-sectional study. Journal of 477 medical Internet research. 2018;20(9):e262. Page | 21 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 478 4. Lee JL, Williams CE, Baird S, Matthias MS, Weiner M. Too many don’ts and not 479 enough do’s? A survey of hospitals about their portal instructions for patients. 480 Journal of general internal medicine. 2020 Apr;35(4):1029-34. 481 482 5. Irizarry T, Dabbs AD, Curran CR. Patient portals and patient engagement: a state of the science review. Journal of medical Internet research. 2015 Jun;17(6):e148. 483 6. Kruse CS, Bolton K, Freriks G. The effect of patient portals on quality outcomes and 484 its implications to meaningful use: a systematic review. Journal of medical Internet 485 research. 2015;17(2):e44. 486 7. Ryan BL, Brown JB, Terry A, Cejic S, Stewart M, Thind A. Implementing and using 487 a patient portal: a qualitative exploration of patient and provider perspectives on 488 engaging patients. Journal of innovation in health informatics. 2016 Jul 4;23(2):534- 489 40. 490 8. Laurance J, Henderson S, Howitt PJ, Matar M, Al Kuwari H, Edgman-Levitan S, et 491 al. Patient engagement: four case studies that highlight the potential for improved 492 health outcomes and reduced costs. Health Affairs. 2014 Sep;33(9):1627-34. 493 9. Mohammed MA, Montague J, Faisal M, Lamming L. The value of a patient access 494 portal in primary care: a cross-sectional survey of 62,486 registered users in the UK. 495 Universal Access in the Information Society. 2020 Nov;19(4):855-72. 496 497 498 499 500 501 10. myGP. Book doctor’s appointment [Internet]. London: iPlato Healthcare Ltd; 2020 [cited 2021 Aug 5]. Available from: https://www.mygp.com/user/ 11. Best J. The NHS App: opening the NHS’s new digital “front door” to the private sector. BMJ. 2019 Oct 29;367. 12. Nelson SJ, Allkins S. Technology in healthcare: the NHS app. British Journal of Cardiac Nursing. 2020 Jan 2;15(1):1-3. Page | 22 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 502 13. Zhao JY, Song B, Anand E, Schwartz D, Panesar M, Jackson GP, et al. Barriers, 503 facilitators, and solutions to optimal patient portal and personal health record use: a 504 systematic review of the literature. AMIA annual symposium proceedings; 2017. 505 American Medical Informatics Association; 2017. p. 1913-22 506 14. Kooij L, Groen WG, van Harten WH. Barriers and Facilitators Affecting Patient 507 Portal Implementation from an Organizational Perspective: Qualitative Study. 508 Journal of medical Internet research. 2018;20(5):e183. 509 15. Sääskilahti M, Ahonen R, Timonen J. Pharmacy Customers’ Experiences of Use, 510 Usability, and Satisfaction of a Nationwide Patient Portal: Survey Study. Journal of 511 medical Internet research. 2021 Jul 16;23(7):e25368 512 513 514 515 16. LaVela SL, Gallan AS. Evaluation and measurement of patient experience. Patient Experience Journal. 2014;1(1):28-36. 17. Al-Busaidi ZQ. Qualitative research and its uses in health care. Sultan Qaboos University Medical Journal. 2008;8(1):11-19. 516 18. DeJonckheere M, Vaughn LM. Semistructured interviewing in primary care 517 research: a balance of relationship and rigour. Family Medicine and Community 518 Health. 2019;7(2):e000057 519 19. Archibald MM, Ambagtsheer RC, Casey MG, Lawless M. Using zoom 520 videoconferencing for qualitative data collection: perceptions and experiences of 521 researchers and participants. International Journal of Qualitative Methods. 2019;18: 522 1-8 523 20. Sbaraini A, Carter SM, Evans RW, Blinkhorn A. How to do a grounded theory study: 524 a worked example of a study of dental practices. BMC medical research 525 methodology. 2011;11:128. Page | 23 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 526 21. Alemu G, Stevens B, Ross P, Chandler J. The use of a constructivist grounded theory 527 method to explore the role of socially-constructed metadata (Web 2.0) approaches. 528 Qualitative and Quantitative Methods in Libraries. 2017;4(3):517-40. 529 530 531 532 22. Chong CH, Yeo KJ. An overview of grounded theory design in educational research. Asian Social Science. 2015;11(12):258-68. 23. Tie YC, Birks M, Francis K. Grounded theory research: A design framework for novice researchers. SAGE open medicine. 2019;7:1-8 533 24. Charmaz K. Constructing grounded theory: A practical guide through qualitative 534 analysis. SAGE; 2006. Chapter 3, Coding in grounded theory practice; p. 42-71 535 25. Chiovitti RF, Piran N. Rigour and grounded theory research. Journal of advanced 536 nursing. 2003;44(4):427-35. 537 26. Ryan M, Marlow L, Forster A, Ruwende J, Waller J. Offering an app to book cervical 538 screening appointments: A service evaluation. Journal of medical screening. 539 2020;27(2):85-9. 540 27. Patient Access. View your medical record [Internet]. Leeds: EMIS; n.d [cited 2021 541 Nov 27]. Available from: https://support.patientaccess.com/medical-record- 542 viewer/can-i-see-my-medical-record-in-patient-access 543 28. NHS. GP surgery appointments [Internet]. [cited 2021 Nov 27]. Available from: 544 https://www.nhs.uk/nhs-app/nhs-app-help-and-support/appointments-and-online- 545 consultations-in-the-nhs-app/gp-surgery-appointments/ 546 547 29. Powell KR, Myers CR. Electronic patient portals: patient and provider perceptions. On-Line Journal of Nursing Informatics. 2018;22(1). 548 30. Walker, J., Leveille, S., Bell, S., Chimowitz, H., Dong, Z., Elmore, J. G., et al. 549 OpenNotes after 7 years: patient experiences with ongoing access to their clinicians’ 550 outpatient visit notes. Journal of medical Internet research. 2019 22(4): e13876. Page | 24 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 551 31. Wildenbos GA, Peute L, Jaspers M. Facilitators and barriers of electronic health 552 record patient portal adoption by older adults: a literature study. Stud Health Technol 553 Inform. 2017 ;235(235):308-12. 554 32. Mishuris RG, Stewart M, Fix GM, Marcello T, McInnes DK, Hogan TP, et al. 555 Barriers to patient portal access among veterans receiving home‐based primary care: 556 a qualitative study. Health Expectations. 2015;18(6):2296-305. 557 33. Elers P, Nelson F. Improving healthcare through digital connection? Findings from 558 a qualitative study about patient portals in New Zealand. Australian Journal of 559 Primary Health. 2018;24(5):404-8. 560 34. Alpert JM, Morris BB, Thomson MD, Matin K, Brown RF. Identifying how patient 561 portals 562 2019;34(12):1395-403. 563 564 impact communication in oncology. Health communication. 35. Rodriguez ES. Using patient portals to increase engagement in patients with cancer. Semin Oncol Nurs. 2018;34(2):177-83. 565 36. Moll J, Rexhepi H, Cajander Å, Grünloh C, Huvila I, Hägglund M, et al. Patients’ 566 experiences of accessing their electronic health records: national patient survey in 567 Sweden. Journal of medical Internet research. 2018;20(11):e278. 568 37. Ancker JS, Osorio SN, Cheriff A, Cole CL, Silver M, Kaushal R. Patient activation 569 and use of an electronic patient portal. Informatics for Health and Social Care. 570 2015;40(3):254-66. 571 38. Ordaz OH, Croff RL, Robinson LD, Shea SA, Bowles NP. Optimization of primary 572 care among Black Americans using patient portals: qualitative study. Journal of 573 medical Internet research. 2021;23(6):e27820. Page | 25 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 574 39. Hannan A. Providing patients online access to their primary care computerised 575 medical records: a case study of sharing and caring. Journal of Innovation in Health 576 Informatics. 2010;18(1):41-9. 577 40. Fisher B, Bhavnani V, Winfield M. How patients use access to their full health 578 records: a qualitative study of patients in general practice. Journal of the Royal 579 Society of Medicine. 2009;102(12):539-44. 580 41. Mold F, de Lusignan S, Sheikh A, Majeed A, Wyatt JC, Quinn T, et al. Patients’ 581 online access to their electronic health records and linked online services: a 582 systematic review in primary care. British Journal of General Practice. 583 2015;65(632):e141-51. 584 42. Rathert C, Mittler JN, Banerjee S, McDaniel J. Patient-centered communication in 585 the era of electronic health records: What does the evidence say?. Patient education 586 and counseling. 2017;100(1):50-64. 587 588 43. Reader TW, Gillespie A. Patient neglect in healthcare institutions: a systematic review and conceptual model. BMC health services research. 2013 Dec;13(1):1-5. 589 44. Baudendistel I, Winkler EC, Kamradt M, Brophy S, Längst G, Eckrich F, et al. 590 Cross‐sectoral cancer care: views from patients and health care professionals 591 regarding a personal electronic health record. European journal of cancer care. 592 2017;26(2):e12429. 593 45. Thomas J, Dahm MR, Li J, Georgiou A. Can patients contribute to enhancing the 594 safety and effectiveness of test‐result follow‐up? Qualitative outcomes from a health 595 consumer workshop. Health Expectations. 2021;24(2):222-33.. 596 46. Zanaboni P, Kummervold PE, Sørensen T, Johansen MA. Patient use and experience 597 with online access to electronic health records in Norway: results from an online 598 survey. Journal of medical Internet research. 2020;22(2):e16144. Page | 26 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 599 47. Freise L, Neves AL, Flott K, Harrison P, Kelly J, Darzi A, et al. Assessment of 600 patients’ ability to review electronic health record information to identify potential 601 errors: 602 2021;5(2):e19074. cross-sectional web-based survey. JMIR formative research. 603 48. Beaney P, Odulaja A, Hadley A, Prince C, Obe RC. GP online: turning expectations 604 into reality with the new NHS app. British Journal of General Practice. 605 2019;69(681):172-3. 606 49. Vodicka E, Mejilla R, Leveille SG, Ralston JD, Darer JD, Delbanco T, et al. Online 607 access to doctors' notes: patient concerns about privacy. Journal of medical Internet 608 research. 2013;15(9):e2670. 609 50. Lockwood MB, Dunn-Lopez K, Pauls H, Burke L, Shah SD, Saunders MA. If you 610 build it, they may not come: modifiable barriers to patient portal use among pre-and 611 post-kidney transplant patients. JAMIA open. 2018;1(2):255-64. 612 51. Lyles, C. R., Sarkar, U., Ralston, J. D., Adler, N., Schillinger, D., Moffet, H. H., ... 613 & Karter, A. J. (2013). Patient–provider communication and trust in relation to use 614 of an online patient portal among diabetes patients: the diabetes and aging 615 study. Journal of the American Medical Informatics Association, 20(6), 1128-1131. 616 52. Witry MJ, Doucette WR, Daly JM, Levy BT, Chrischilles EA. Family physician 617 perceptions of personal health records. Perspectives in health information 618 management/AHIMA, American Health Information Management Association. 619 2010;7(Winter). 620 53. Dendere R, Slade C, Burton-Jones A, Sullivan C, Staib A, Janda M. Patient portals 621 facilitating engagement with inpatient electronic medical records: a systematic 622 review. Journal of medical Internet research. 2019;21(4):e12779. Page | 27 medRxiv preprint doi: https://doi.org/10.1101/2022.07.23.22277951; this version posted July 29, 2022. The copyright holder for this preprint (which was not certified by peer review) is the author/funder, who has granted medRxiv a license to display the preprint in perpetuity. It is made available under a CC-BY 4.0 International license . 623 54. Van den Bulck SA, Hermens R, Slegers K, Vandenberghe B, Goderis G, 624 Vankrunkelsven P. Designing a patient portal for patient-centered care: cross- 625 sectional survey. Journal of medical Internet research. 2018;20(10):e9497. 626 55. Sulieman L, Steitz B, Rosenbloom ST. Analysis of employee patient portal use and 627 electronic health record access at an academic medical center. Applied clinical 628 informatics. 2020 May;11(03):433-41. 629 56. Vasileiou K, Barnett J, Thorpe S, Young T. Characterising and justifying sample 630 size sufficiency in interview-based studies: systematic analysis of qualitative health 631 research over a 15-year period. BMC medical research methodology. 2018;18(1) Page | 28