RA patients contemplate the ideal portal

Developers and physicians aren’t the only ones fielding Utopian visions of the perfect medical devices and databases — as it turns out, patients are partaking in the fantasy, too.

According to emerging data presented at the Annual Congress of the European League Against Rheumatism (EULAR 2013) this week, patients suffering from rheumatoid arthritis (RA) have dreamt extensively about how the ideal online care management tool would function. And by way of patient focus groups, those dreams could soon be coming true.

The focus groups (six in all) — helmed by Åsa Revenäs of the Department of Neurobiology, Health Care Sciences and Society, Karolinska Institutet, Sweden, and the rest of the study team — queried RA patients about what they needed on the grounds of physical activity and portal access. The group insisted that for a treatment scenario to be maintained, it would need to enlist the following:

  • Personal incentives
  • Personal mastering
  • Information adapted to the Rheumatoid Arthritis (RA) condition
  • Peer support
  • Professional coaching
  • Physical environment and resources
  • Societal support/financial assistance

"Despite growing evidence for the benefits of physical activity in RA, the majority of patients do not exercise sufficiently," said Revenäs. "Our assumption is that developing intervention strategies based on health behaviour change theories, making them available over the internet and involving users in the design process may facilitate the adoption and maintenance of PA behavior."

The patients also noted that the superlative patient portal would employ the below capacities:

  • Up-to-date and evidence-based information and instructions
  • Self-regulation tools
  • Social interaction
  • Personalised set-up
  • Attractive design and content
  • Ease of access

"By developing an internet- service supporting PA based on patients' experiences and knowledge, we improve the likelihood of it being fit for the needs of users. In turn, this will encourage successful implementation and inspire RA patients to include PA as part of routine care." Revenäs concluded.