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Patients Know Best: Qualitative Study on How Families Use Patient…

- - - - 1- A common definition of a PHR is “an electronic application through which individuals can access, manage and share their health information, and that of others for whom they are authorized, in a private, secure, and confidential environment.”
      - 2- In this work, we use the term “PCEHR” to refer to a record that gives all rights to the user who can then decide to share (parts of) the record with various health care providers.
      - 3- The main focus of this work is PHRs as a means to foster patient empowerment.
      - 4- Previous studies of PHR user needs and design recommendations [8-13] have identified unresolved design questions.
        
        i) Should Patients Be Given Immediate Access to Test Results?
        
        ii) Should Patients Be Able to Edit the Health Record?
        
        iii) What Are Patients’ Information Needs?
    - - 1- An important source of variability among our participants that influenced their relationship to the PCEHR was found to be their coping styles.
      - 2- However, much of the coping literature distinguishes between approach- and avoidance-oriented coping
      - 3- Approach-oriented coping typically involves information seeking, problem solving, seeking social support, actively attempting to identify benefits in one’s experience, or creating outlets for emotional expression
      - 4- Avoidance-oriented coping typically involves cognitive strategies such as denial and suppression and behavioral strategies such as disengagement.
      - 5-Our study prompted us to question whether and how a PCEHR can meet the needs of patients with different coping styles.
      - 6- Facilitating Approach-Oriented Coping With Self-Determination Theory
        
        i) Competence refers to a feeling of confidence and effectiveness in the domain of behavior in focus
        
        ii) Autonomy refers to an internal perceived locus of control or regulation by the self.
        
        iii) Relatedness refers to a sense of connection with others and belonging.
        
        iv) The notion of need fulfilment leading to internalization of motivation was a guiding theme in our analysis.
    - - 1- Taking control involves learning to control the disease, developing cognitive coping strategies, controlling social roles, and separating the disease from one’s own identity.
      - 2- Relinquishing control involves asking for help, accepting that not everything can be controlled, and developing a sense of coherence, as well as awareness and acknowledgement of personal boundaries.
- - - - Motivation to use the PCEHR guided the grouping of our participants into a controller, collaborators, cooperators, and avoiders
    - - Motivation to use the PCEHR correlated with participants’ coping styles.
    - - 4 dimensions of variability were derived from the SDT [26]: perceived competence, perceived autonomy, perceived relatedness, and (hence) internalization of motivation.
    - - We clustered participants into groups, based on the codes in Figure 3. We refer to the outlier as controlling, and the groups as collaborating, cooperating, and avoiding.
- - - - In our study, participants did not explicitly mention the need to connect to people other than their health care providers through the PCEHR, but the potential benefits of facilitating social support through PCEHRs should be investigated in future research.
    - - Looking at health management technology and PCEHRs in particular, patients are faced with 2 types of competence to acquire, namely, technological competence and disease-related competence.
        
        This highlights a need for the user interface to make data security mechanisms very clear to users, so that they feel comfortable to explore and to learn about the technology. Furthermore, adequate introduction and training are essential, and ease of use is of paramount importance
        
        Future work could investigate how such systems could also take patients’ previous knowledge and perceived competence into account.
    - - Concluding, the use of a PCEHR and all its features has to be voluntarily (as it was in this study). However, the effects of autonomy on nonadherence (eg, when a patient chooses not to adhere to a recommendation) would benefit from future research
  - - - i) First, as noted by Aujoulat et al [6], understanding and accepting the cause of the illness can help with relinquishing control. Therefore, one approach is to provide patients with enough
        information to comprehend the rationale behind diagnosis and treatment, and to understand that they are not to blame for the diagnosis and that their control over the disease is limited.
      - ii) Second, technology for patient empowerment might enable patients to articulate their needs for support: patients could communicate their needs and values in the PCEHR, share their illness narrative with their health care providers, request support, and explicitly choose not to take control and responsibility for a part of the treatment.
      - iii) If self-awareness and choice are central themes in patient empowerment, the conscious decision not to take control of some aspects of an illness can itself be empowering.