Abstract
Background: Personally Controlled Health Records (PCHR) are patient-centric tools which allow individuals to own, manage, access and share their health information online from anywhere, at any time. Patient-centric tools have received considerable interest and investment in recent years here in New Zealand and internationally. These tools are thought to have the potential to increase individuals’ self-management and involvement in their own health, as well as improve healthcare efficiency and delivery.
Aim: The aim of this study is to report and analyse the experiences of three different user groups using PCHR for Multidisciplinary Care Team (MDCT) including the advantages, disadvantages, barriers and obstacles, and the current state of PCHR.
Method: In order to achieve the aim of this study a qualitative based method using key informant interviews was used. Given the limitation of time, scope and novelty of this study, key informant interviews were thought to be more suitable to achieve the aim of this research. This study is a dissertation that should be completed in a six month period. Also, not many people have used the PCHR locally (Dunedin, New Zealand), and not much literature is available to bench mark against. Therefore, key informant will allow collecting rich data from a small number of participants in a short period.
In Dunedin, PCHR (The Diary) was used as a live example for this study and sixteen key informant interviews were conducted. Interviews covered three different groups of users: people who provide The Diary, clinicians and health professionals from community health organizations who have used The Diary, and patients who have used The Diary to manage their own health. It was important to seek new information from each group. Although the number of interviewees was small, data saturation was confirmed across the three groups.
Interviews were transcribed and analysed with thematic analysis. Seven major themes were identified from reviewing the literature and prior to conducting the interviews: workflow and efficiency, usefulness/advantages and disadvantages, early adopters/innovators, chronic diseases, security and privacy, interoperability, and improvements/usability/ recommendations.
Results: The key findings of this research showed that those who can benefit the most from The Diary are the least able to use it. It suits those who have basic knowledge about computers and the internet and those who can afford to use them. The Diary is also best suited for individuals who are motivated about their health despite their health condition.
Conclusion: In conclusion, results revealed that participants have identified several potential benefits of adopting The Diary, as well as several potential obstacles of adopting it. However, more research is needed in the future with a larger sample, an easier to use PCHR, different population i.e. different parts of the Multidisciplinary Care Team (MDCT) other than community health workers, patients with different chronic illnesses, and healthy patients. This research can be used as a basis and tested in future research on PCHR adoption.