Table 5

Discussed person-generated health data (PGHD) utilisation effects on stroke survivors’ interest in their care processes

Interest in care processes
Stroke survivorsClinicians
  • Site 1 survivors indicated that seeing rehabilitation progress would help them know whether the system was working and that their effort was worthwhile.

  • Seeing their PGHD could help them understand the process they are undergoing, and see if they are improving everyday.

  • PGHD could be better than relying on clinician’s feedback, which could be slow and limited to what they tell survivors.

  • PGHD could potentially increase their interest in knowing their therapy status, as it would give them a better picture of the progress they have made, and how far they have have to go.

  • PGHD could help survivors with self-management of energy.

  • For one Site 1 survivor, PGHD does not interest them at all.

  • Interest may also change over time, from detailed interest to big picture, that is, whether they are improving or their treatment needs to change.

  • PGHD would be a form of feedback to inform survivors where they have done well, and where they need to do better.

  • PGHD could potentially affect site 1 survivors’ trust about their care process.

  • The sentiments of stroke survivors about PGHD affecting interest in the care process were strongly reinforced by the clinicians.

  • Stroke survivors would potentially understand their rehabilitation progress by comparing results of their exercises over time.

  • Clinicians believed that survivors would be more interested in how PGHD could have positively impacted achievement of their activities of daily living goals or functional activity.

  • Clinicians try to make their therapy goal focused, and PGHD could help survivors understand how their exercises related to their goals.

  • A question in the PROM-PGHD could be related to understanding the purpose of the exercise in their recovery.

  • A clinician felt that even if survivors did not fully understand the data, they would like to see something.

  • Clinicians agree that PGHD could affect survivors’ sentiments about the care they receive, that is, if they were using the system and they just stopped without the data they would wonder why they had to do the exercises in the first place.

  • PROM, patient-reported outcome measure.