JMIR Publications

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  Evidence: Original Papers

  Aug 4, 2017

  Evolving Patient-Researcher Collaboration: An Illustrative Case Study of a Patient-Led Knowledge Translation Event

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  Authors List:

  • Jenny Leese  
  • Sheila Kerr  
  • Annette McKinnon  
  • Erin Carruthers  
  • Catherine Backman
  • Linda Li
  • Anne Townsend

  Abstract:

  Patient engagement occurs when patients actively collaborate in health research in ways that are meaningful to them. Resources to facilitate patient engagement have been developed, but their approach is mainly toward building competencies in the early stages of forming new practices of patient engagement. This paper describes a patient-led collaboration in rheumatology, in the context of an established patient-researcher partnership. Using a case study approach, we report on a research knowledge translation event, titled eROAR2013 (Reaching Out with Arthritis Research), led by members of the Arthritis Patient Advisory Board (APAB), which is a group of volunteer advocates living with arthritis based at Arthritis Research Canada. We provide an overview of APAB’s decade-long history, describe the planning and the event itself, and report on the challenges encountered, reflections and solutions pertinent for sustaining patient-researcher collaborative practices.

  • J Participat Med 2017;9(1):e13

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  Evidence: Original Papers

  Jul 7, 2017

  Information and Communication Technologies to Support Chronic Disease Self-Management: Preconditions for Enhancing the Partnership in Person-Centered Care

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  Authors List:

  • Sabine Wildevuur  
  • Fleur Thomese
  • Julie Ferguson
  • Ab Klink

  Abstract:

  Objective: In order to alleviate the pressure on health care systems exerted by the growing prevalence of chronic diseases, information and communication technologies (ICT) are being introduced to enable self-management of chronic diseases by supporting partnerships between patients and health care professionals. This move towards chronic disease self-management is accompanied by a shift in focus on integrating the patient with his or her perceptions on the chronic disease as a full-fledged partner into the health care system. This new perspective has been described as “person-centered care” (PCC). To date, information and communication technologies only partially build on the principles of PCC. This paper examines the preconditions of ICT to enable a person-centered approach to chronic disease management. Methods: Using cancer treatment as a case study for ICT-enabled PCC, we conducted a comparative analysis of thirteen scientific studies on interventions presented as ICT-enabled PCC for cancer treatment, to answer the research question: What are the preconditions of ICT-enabled PCC in chronic disease management? Based on the intended and actual outcomes, we distilled in several analytic steps the preconditions of ICT-enabled PCC for chronic disease self-management. Results: We distinguished four user-related preconditions of ICT-enabled PCC: (shared) decision making, personalized ICT, health-related quality of life, and efficiency. Conclusions: We argue that these four preconditions together can improve people’s self-management of chronic diseases by strengthening the partnership between the patient and the healthcare professional. Moreover, the study revealed a discrepancy between intended and reported actual outcomes in terms of realizing person-centered care.

  • J Participat Med 2017;9(1):e14

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  Opinion: Viewpoints, Columns,...

  May 17, 2017

  Should Hospital Patients Have Bedside Access to Their Complete Medical Records?

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  Authors List:

  • Lisa V Grossman
  • Susan Restaino
  • David Vawdrey

  Abstract:

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  • J Participat Med 2017;9(1):e11

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