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2 Personally Controlled Health Record (PCHR)

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Characteristics of clients who would benefit most from The Diary from the perspective of community health workers. Characteristics of the person who would benefit most from using The Diary from the client's perspective. Will integrating The Diary with an EPD yield better results from the perspective of the provider of The Diary?

The overall impression of the community groups' workers about Die Dagboek from the perspective of Die Dagboek's supplier.

Table 2 below represents a summary of the main potential benefits of the PCHR which were  reported in the literature
Table 2 below represents a summary of the main potential benefits of the PCHR which were reported in the literature

Theme Two: Usefulness/ Advantages and Disadvantages

The general impression of clients was that their healthcare professionals asked them to use the Diary. It seems that some of the participating clients did not have any basic knowledge about the role of the Diary in improving their health. In addition, this group of participants identified usability issues as a major barrier to the Diary.

They also felt that the disadvantages of The Diary in general include the amount of time it takes to fill it in, and the motivation of either carers or patients themselves, this is a disadvantage not only for The Diary in particular , but also for any other PCHR/ Diary. For the majority of this group of participants, one major problem was the difficulty of engaging their patients in The Diary. Participants felt that The Diary interfered with their relationship with their patients, as they spent so much time showing them how to use The Diary rather than talking about the patients'.

Although The Diary only provided a few real benefits for some of the community health workers interviewed, they all believed that it has great potential to provide many benefits in the future, such as; encouraging people to improve their health status, helping them understand their health status and educating them on how to improve it, helping the clients become independent and self-managed, and improving patients' relationships with their health professionals. At the same time, some other patients were interested in computers and willing to learn more, and that's what attracted them to The Diary. So having the right motivation to use The Diary of PCHR is important for update and sustainability.

Theme Three: Early Adopters and Innovators

The third group of clients/patients generally did not understand the benefits The Diary could bring to them, they were not sufficiently informed about it and the benefits they could gain from using it. Most clients were asked by their supervisors to use it and did so out of boredom or to get the free GP voucher. Being in a good mood the day they were asked to try The Diary.

The last group of interviewees also described their personalities and their motivations for using The Diary. Most of them, even the clients who did not participate in the interviews, seemed to have a good relationship with their support workers and this is what mostly made them try The Diary.

Theme Four: Chronic Diseases

Some believed that The Diary might suit mentally ill clients, as some of these clients are competent and aware of their own conditions and know how to manage them. On the other hand, mentally ill clients may also experience amnesia, which means that it is difficult for them to remember things in the past or remember logins and passwords; this was the case with most of the mentally disturbed clients; they struggled with memorizing logins and passwords which was part of the reason for them not coming back to The Diary. In the third group, one customer participant felt that someone familiar with computers would benefit most from The Diary, while another participant felt that anyone could benefit from using it.

Sometimes people rely on something (a certain type of food) and ignore many other things, the Diary helps them to be aware of this and become more aware." In the end, all participating health professionals and Diary providers felt that the Diary would only suit those who interested in their own health, self-motivated clients and those who really want to find a way to improve their health.Also, something like Dnevnik would only suit clients who can afford internet and computers at home and have some level of health literacy. computers and the Internet.

Theme Five: Security and Privacy

These clients have been in the health system for so long that they are used to disclosing their health information to their health professionals." However, the problem came when they tried to use the Journal especially if it was on its own. Since Ditari was an unfinished beta version and had technical and functional issues, it was easy to turn away some customers.

The diary also has limitations in terms of dosage choices; as well as restrictions on the selection of minerals and vitamins. Another major problem that almost every client, especially those with mental health conditions, faced was that it was difficult for them to remember their login details, which also put most of them off and made it harder to convince them to come back for The Diary. Another issue raised by one participant is that the clinical team typically has difficulty engaging with their clients; they normally have enough trouble getting them to keep appointments or convincing them to make changes in their lives.

So asking clients to work with The Diary was very stressful for the clinical team, especially as some of them felt overprotective of their clients and did not want to involve them in something they themselves were not confident about. Yet only one participant was concerned that the data would be used in the wrong way, for example to feed insurance companies. Only one indicated that she was not concerned, as counselors explained to her that if she felt uncomfortable with something in The Diary, she could take it out.

Theme Six: Interoperability

Theme Seven: Improvements, Usability and Recommendations

One participant also suggested that if the Diary is to be used by mental health patients, it needs more mental health guidance. Also, all participants strongly insisted that Dnevnik needs a lot of functional and technical improvements, and the user interface should be much easier to use. Why did they choose us when there are people who use The Diary much more than our customers.

One participant felt that The Diary will not be a success among community groups, although it has great potential. While all of these participants seemed to believe that The Diary is a good idea, they all had a different point of view on how to move The Diary forward. Meanwhile, some others felt that The Diary needs political support, such as support from the district health board or the national health board.

Also, some recommended that if the Diary is to be used by clients with mental illness, then it needs more mental health guidance. One recommended that the Journal should be used by caregivers on behalf of patients to begin with. While another client's main purpose for using the Journal was to manage their weight.

5 Discussion

  • Workflow and Efficiency
  • Usefulness/Advantages and Disadvantages
  • Early Adopters and Innovators
  • Chronic Diseases
  • Security and Privacy
  • Interoperability
  • Improvements, Usability and Recommendations

They believed that the Diary will engage patients in their health and will make them more aware of their health problems. The current form of the Diary had little value for customers and increases the workload of workers, as will be discussed in section 5.7. The diary also improves communication between clinicians and patients and puts them on the same page.

On the other hand, participants in three groups also identified some disadvantages of using the Diary. Another disadvantage of the Journal that was not discussed in the literature is that the Journal uses medical terminology for medication and health problems. One of the important findings is that motivation from both patients and health workers is a key aspect for the Journal to work with community groups.

Most clients seemed to use the Journal without a basic understanding of how it could help them improve their health. The results show that the Diary would work perfectly for any customer interested in their health, regardless of age or medical condition. The diary could be more useful to clinicians and carers if they were on the same page.

6 Conclusions

Customers need to understand the expected benefits of The Diary and how it can help improve their health, not just the need to know how to use it. Moreover, The Diary needs motivation not only from the clients, but also from clinicians and support workers. Some suggested touch screens, as almost all customers had difficulty using the mouse and their keyboard.

This not only affected the general attitude of community groups towards the Journal, but was also the reason many clients refused to participate in interviews. Customers struggled so much with using the Diary and found it extremely difficult to use. Although, the Diary was a beta version, it was enough for the participants to see how it worked as it was almost a finished version.

Also, using the beta version would help the provider to use end-user feedback about the Diary and improve it. Also, as the results revealed, community clients are unwilling to change the way they receive health information and are not looking for new ways to manage their health. Using another PCHR system other than Diary that is fully finished and easier to use.

Self-managed access to personalized healthcare by automatically generating customized health education materials from electronic health records. Privacy and security in health information technology (electronic health records) implementation: US and EU compared. Attitudes and behaviors regarding the introduction of electronic health records among Austrian and German citizens.

Understanding contrasting approaches to nationwide implementations of electronic health record systems: England, USA and Australia. Patient and health care provider concerns about electronic health record privacy: A review of the literature.

Gambar

Table 2 below represents a summary of the main potential benefits of the PCHR which were  reported in the literature
Table 3 below represents a summary of the barriers to adopting PCHRs which were reported  in the literature
Table 4: Major Themes and the interview guiding questions for each group

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