3.1 Expectations of the PHR
The general attitude towards the PHR among the majority of respondents was initially positive. Respondents indicated that they would welcome its introduction and could well imagine using it. However, some respondents were sceptical about introduction of the PHR. One respondent feared that the PHR could be very confusing due to the large amount of data available. Only one respondent had a negative attitude towards introduction of the PHR. This respondent did not see any benefit in its use and could not yet “recognize its advantage” (female, 74 years).
3.1.1 Advantages and disadvantages
The participants were asked to name the advantages and disadvantages they associated with introduction and use of the PHR. In terms of the advantages, many factors were mentioned by the respondents. One of the most frequently mentioned advantages was improved communication, which five of the eight respondents from the individual interviews hoped might be achieved with the PHR. This included both communication between the various service providers in healthcare and doctor-patient communication.
“I also think it’s good. You have a few more problems when you get older; that’s just the way it is, that’s all, and when everyone communicates well with each other, especially when it comes to test results, X-ray examinations, all those things that happen around or with people, I think it’s good if you can do it electronically, if the doctor treating you has it on site and can put it all together.” (female, 74 years)
The reason for this, according to the respondents, is simply the possibility of forwarding data and that all information is thus bundled centrally, in one place. In this context, three respondents assumed that central storage of data in the PHR would lead to the avoidance of duplicate examinations. One respondent saw an advantage to centralized storage in terms of the availability of all relevant data in an emergency:
“... and if i’m involved in some kind of emergency, then this can be checked there in the hospital – so I imagine that – also really fast (...), what I suffer from or which medication I must take, so this does not have to be queried, since I’m no longer able to do it.” (female, 79 years)
Furthermore, most respondents assumed that time and financial resources could be saved by introduction of the PHR, in terms of physicians and the entire healthcare system (n = 6). Two respondents saw an advantage in the fact that the PHR itself could give them an overview of their health data and allow family members to access this information.
Three participants also expected that it would give them some peace of mind..., as patients will no longer have to rely on their memory (e.g., regarding the medication plan), which will, in turn, improve patient safety.
Furthermore, the participants were asked what disadvantages or concerns they saw in provision of a Personal Health Record and in its use. Overall, however, very few statements were made on this subject.
“Well, if the person can influence what is written on it, then… I [would see] fewer disadvantages.” (female, 69 years)
Two test persons feared that the content contained in the PHR might be incomprehensible. In this context, one respondent stated that it will involve a large amount of data, especially in the case of older people, so that the file would be very extensive. One respondent feared that with introduction of the PHR, less attention would be paid to people, since all the preliminary information relating to them would already be available. One respondent expressed concern about misuse. Two respondents stated that they currently had no concerns or saw no disadvantages.
3.1.2 Previous knowledge
The older adults were asked where they usually obtained information on health-related issues from. Physicians, magazines (daily newspapers, pharmacy magazines and pensioners’ magazines) and the internet were mentioned as the most common source for information and were each used by three test persons. At the same time, two elderly people noted that they considered the internet to be a dubious source as it often contains contradictory information. Furthermore, the older adults informed themselves via pharmacists (n = 2) and books (n = 2).
In addition, in the subject area “Previous Knowledge”, participants were asked about their previous experience with the PHR. All respondents stated that they had already heard about the PHR prior to the study. According to their statements, the respondents had heard or read about it on the internet (n = 4), in the press (n = 3) and in television reports (n = 2), as well as in magazines and in information material from their doctor’s office (n = 1 in each case, with multiple answers possible).
“Not so much heard, but I’ve read a lot about it and have read with particular interest if it described what is being planned for it.” (male, 74 years)
When asked what they already knew about the PHR, the answers were very heterogeneous. Four respondents stated that they had read that the PHR was to be introduced next year.
Two participants were able to provide information about what data would be included. Test results and prescribed medication were given as examples.
“Actually, only that it is being introduced. I didn’t think it was even on the agenda for the near future. But that everyone can see all the findings, that yes, and that was actually the information I had.” (female, 74 years)
In each case, one respondent had already heard about the advantages and disadvantages of the PHR and suspected that every healthcare provider would have access to the stored data (with different stakeholders possibly being given access to the stored data).
3.1.3 Data security
The participants were specifically asked about data protection in relation to the PHR. None of the respondents saw the topic of data protection as a worrisome issue that could hinder rollout of the PHR. The majority of participants estimated the risk of data misuse as low (n = 5).
“No, not really, because I think we are well-secured here in Germany. They are very careful, and sometimes that is even a hindrance, but I think that it is necessary and good.” (female, 75 years)
Three participants felt that data protection was an important issue, with the security of their own data being a basic prerequisite for using the PHR. For them, the priority was ensuring that only authorized persons have access to their own data.
The respondents’ low level of concern in connection with data protection issues can be attributed to various reasons. On the one hand, half of the respondents mentioned that there is always a risk of data misuse when using digital systems anyway (n = 4). This risk was no greater for the PHR than when using a smartphone. Two of the respondents also mentioned that they considered the probability of their data being stolen to be very low. Three of the respondents stated that they considered the public debate on this topic to be exaggerated and that it is rather obstructive for some developments. Other factors cited were that a great deal of attention is paid to data protection in Germany and that responsible authorities can be relied upon (n = 3). This was evident, for example, in the case of the German “Corona-Warnapp” (an application for contact tracing), which two of the participants cited as a good example of how a government-appointed app can function in a data-protection-compliant manner. The positive impression of the “Corona-Warnapp” was enhanced by the fact that problems with the system and during development were communicated transparently from the very beginning (n = 1).
3.2 Requirements of an eLearning system
Furthermore, the respondents were asked to name concrete requirements for the eLearning system, which would help them to handle the data in their PHR with confidence. The questions were about which topics they would like to be informed about, how this content should be presented, which playful or motivational elements they could envisage and what support they would need in order to use the eLearning system.
3.2.1 Learning content
With this category, the subjects were asked which topics they would like to get information about in relation to the eLearning system. Some respondents noted that they still knew too little about the PHR to be able to respond in more detail. Six of the eight respondents expressed that they would like to know more about access rights, i.e., who has access to the data stored in the PHR from the outset and how access rights can be managed for different actors in the healthcare system (adding and removing access rights).
“That, yes; who has access, how access is enabled, and how I can decide who can see or use what.” (female, 79 years)
One respondent was concerned about whether employers would have access to the stored health data. In this context, two participants reported also wanting to be informed about who can enter data and whether data can also be entered by the users themselves. Three respondents were interested in how their own access or initial activation takes place. Two respondents firstly wanted to know, in principle, what kind of data are stored in the PHR. One respondent expressed uncertainty as to whether only the most recent health data are stored or all data “from the cradle to the grave”. Two respondents were also interested in the topic area “Security Information and Protective Measures”; i.e., they wanted to know what they could do themselves to protect their data, but also what measures are already being taken to protect the stored data. One respondent named, as possible topics, whether/how data in the PHR can be deleted, whether changes will be made to the insurance card, and what the overarching goal of the PHR is.
Focus group respondents also indicated that they would like to be informed about the time period between a physician visit and the uploading of data to the PHR, whether there will be an obligation to upload certain data, who is responsible for the correctness and completeness of the uploaded data, and what the procedure is when changing health insurers. Furthermore, respondents in the focus group wanted help in assessing which data might be relevant for which physician.
3.2.2 Layout of the eLearning system
The respondents felt that presentation and preparation of the content covered in the eLearning system is an important factor relating to the usability of the system. The vast majority said that the content should have a clear structure (for example, in the form of diagrams etc.) (n = 6). In particular, content relationships and sequences should be recognizable. Seven of the eight participants preferred to have content presented as smaller blocks, with reduced information, one after the other, a format perceived as being easier to read than long passages.
“Explained as concisely as possible and not too much, yes. If what is explained is explained again, that would be too much.” (male, 74 years)
Furthermore, the topic of accessibility and the low threshold of the eLearning system was discussed. In this context, simple language, easy comprehensibility of texts, images and videos, and clear, unambiguous language were each mentioned by five of the respondents and were mostly considered by them to be some of the most important points that should be taken into account during development. Likewise, the desire to avoid use of foreign words was expressed (n = 3). As possible functions that could increase learning success during use, it was mentioned that most content should only be explained superficially, with the possibility of accessing more in-depth information via a link (n = 5). Explanation of various terms (in a glossary) was mentioned here as a useful addition. One respondent also stated that the learning speed should be individually adaptable and that individual learning sections should be repeatable.
There was no clear preference among the respondents as to the form in which the content should be presented. Five respondents indicated that they would prefer text as the medium, while five respondents also indicated that they would consider using videos if these remained short. One respondent was completely opposed to videos, while half (n = 4) indicated that pictures and graphics would support the content. Three of the participants stated that they could imagine being guided through the application in the eLearning system by a virtual trainer, but that this trainer should not appear “silly” (n = 1).
On this topic, the focus group added that there should be an export function for the content so that it could be printed out if necessary. Furthermore, respondents in the focus group wanted to have an additional summary at the end of each chapter to increase the clarity.
Most participants stated that they would prefer a neutral, simple design for the eLearning system (n = 5). Too many and overly bright colours should not be used as these would be distracting (n = 4). Only one respondent was in favour of very strong colours, as these would increase users’ interest level. However, highlighting important content using colour seemed to make sense to some (n = 3) and would support readability. Likewise, two participants indicated that bold text would also be appropriate for this purpose. With regard to the use of text, two respondents indicated that they considered a large font size to be important (at least 14p). Another respondent stated that an adjustable font size was necessary. Two of the participants mentioned that the text should contrast with the background. Other points mentioned were that the background should be bright (n = 1) and that a serious-looking font (n = 1) and simplifying symbols were useful (n = 1).
3.2.3 Gamification elements
Within this topic area, participants were asked about possible playful and motivational elements within the eLearning system. This involved the need for a reward system, comparison with others, and commenting on or rating training content.
Of the eight participants interviewed, seven commented on whether they would like to see integration of a reward system that would, for example, reward them by means of points for completed learning units and increase users’ motivation. Five of the participants fundamentally rejected the idea that any form of reward system should be integrated into the eLearning system.
“No. There are so many points and stars already.” (female, 74 years)
Two other respondents could envisage such systems having a motivating effect but, at the same time, expressed that they themselves did not need motivational elements.
“I don’t need it, but I do think it motivates a lot of people.” (female, 75 years)
The majority of participants (n = 6) rejected the idea of point systems or other rewards such as stars, while one respondent could not envisage monitoring learning success by means of a quiz. One participant pointed out that use of the eLearning system could be linked to the bonus programme of some health insurance companies, which could lead to an increase in motivation.
Furthermore, the older adults were asked to what extent they would like to use a function in which they could rate or comment on eLearning system content. Four of the respondents indicated that they would definitely be interested in rating the content they had accessed, in order to give the creators of the texts/videos feedback on the quality and usefulness of the contributions.
“You could include that, yes – feedback on how well that succeeded in conveying [the information], e.g., if it benefited you or not. Sometimes question only requires a yes or no answer. You can find this everywhere on the internet: Did it help you when you called up something somewhere when you had a question?” (male, 84 years)
One respondent emphasized, however, that such a function would have to be voluntary. Three other participants, on the other hand, stated that they were against the introduction of a rating or comments system because they saw no need for it and would not use it.
Regarding the topic “Comparison with Other Users”, the seniors were asked whether they would like to compare their learning results or learning successes within the learning program with others. Only two of the eight participants commented on this. Both rejected comparison with others.
“Yes, maybe for some this is interesting, [but] for me, less so. I just want to know if I can do it or not, yes.” (female, 75 years)
3.2.4 Support for the eLearning system
The topic area “Operational Support” firstly asked how the older adults would like to be trained on the eLearning system once it is fully developed. Five respondents indicated that they would like to learn about the system in a group training setting.
“Personally, in a group, in a smaller group, I would like it best.” (74 years, male)
Two participants specifically mentioned a group size of five to ten participants, or eight people, respectively. The advantages of group training were given as being that an exchange with like-minded people could take place, other participants’ questions could be addressed, and a personal exchange could take place. In the opinion of the older adults, group training should allow for hands-on practice and trial and error. One respondent suggested visualizing the training with a presentation. Online training was not preferred by any of the respondents. Two respondents stated that an additional manual or printed material would be helpful. One respondent stated that a manual would be sufficient. This respondent saw a manual as having the advantage of enabling individuals to easily and quickly pass on information to relatives or friends. One respondent declined printed material or would print out the information himself/herself if needed.
On this topic, the respondents were then asked what form of help functions there should be within the eLearning system.
The majority of respondents stated that they would be happy to resolve technical or content-related difficulties over the phone (n = 6). This kind of problem-solving was perceived as being easier because questions and comments can be addressed directly.
“Yeah, so maybe if it seems a little weird or not right, or I can’t do it, I would want to maybe have a phone number where I could then call, and together, both sides could resolve it.” (female, 74 years)
Likewise, six participants could imagine making use of a “frequently asked questions” (FAQ) service. However, such an FAQ function should be reduced, i.e., not containing too much information. At the same time, one participant stated that it was her experience that FAQs often did not provide the exact question or answer she was looking for. Email was mentioned by five respondents as being another way of contacting a support service. This was described as being helpful because it could enable a quick response to be obtained for information needed with regard to one’s own problem, and it could also be used at weekends and at night.
Two participants expressed the desire to have a manual explaining correct use of the eLearning system. Other possible contact points for help with problems were named as being one’s own family (n = 1), a chat function (n = 1) and a forum for questions (n = 1).
Respondents in the focus group additionally mentioned the desire to have a specific person to contact for concrete content-related problems.