A patient-centered system in a provider-centered world: challenges of incorporating post-discharge wound data into practice

Abstract

Objective: The proposed Meaningful Use Stage 3 recommendations require healthcare providers to accept patient-generated health data (PGHD) by 2017. Yet, we know little about the tensions that arise in supporting the needs of both patients and providers in this context. We sought to examine these tensions when designing a novel, patient-centered technology - mobile Post-Operative Wound Evaluator (mPOWEr) - that uses PGHD for post-discharge surgical wound monitoring.

Materials and methods: As part of the iterative design process of mPOWEr, we conducted semistructured interviews and think-aloud sessions using mockups with surgical patients and providers. We asked participants how mPOWEr could enhance the current post-discharge process for surgical patients, then used grounded theory to develop themes related to conflicts and agreements between patients and providers.

Results: We identified four areas of agreement: providing contextual metadata, accessible and actionable data presentation, building on existing sociotechnical systems, and process transparency. We identified six areas of conflict, with patients preferring: more flexibility in data input, frequent data transfer, text-based communication, patient input in provider response prioritization, timely and reliable provider responses, and definitive diagnoses.

Discussion: We present design implications and potential solutions to the identified conflicts for each theme, illustrated using our work on mPOWEr. Our experience highlights the importance of bringing a variety of stakeholders, including patients, into the design process for PGHD applications.

Conclusion: We have identified critical barriers to integrating PGHD into clinical care and describe design implications to help address these barriers. Our work informs future efforts to ensure the smooth integration of essential PGHD into clinical practice.

Keywords: dissent and disputes; mobile health; patient engagement; patient-centered care; surgical wound infection.

Figure 1:

mPOWEr. Left: Patient-facing HTML5 mobile-optimized web-application enables patients to capture and share structured surgical site infection (SSI) signs/symptoms and wound photographs. Right: Provider-facing web-based dashboard allows providers to triage and manage patients and the patient-generated health data (PGHD) they share.

Figure 2:

The overall, human-centered design process for mPOWEr, with emphasis on the steps (dashed boxes) that contributed substantially to the results reported herein. Person figures (green) denote the patients we engaged, person figures with stethoscope (blue) denote the providers we engaged, and the gear symbol denotes the methods we applied. Boxes with arrows feeding into the “mPOWEr design” represent the components of our process, including the needs assessment, usability inspection, design refinement, and usability testing (left), as well as frequent input from patient and provider team advisors (bottom left) and a prospective survey of the peri-/post-discharge experiences of surgical patients (bottom right). Full color version available online.

Figure 3:

Themes organized by Shapiro et al.'s model of PGHD flow. Themes 1, 5, 8, and 9 (green) are areas of agreement between patients and providers, and themes 2–4, 6, 7, and 10 (red) are areas of conflict between patients and providers. Full color version available online.

Figure 4:

Patient-facing mPOWEr application. Callouts (orange) highlight design implications from Table 2 (corresponding to the number in the circle). Dotted lines (red) indicate screen changes due to clicking or tapping. Full color version available online.

Figure 5:

Provider-facing mPOWEr dashboard. Lower right portion of the figure shows the mobile version of the provider dashboard (depicting a consult request sent from a clinic nurse to a surgeon). Callouts (orange) highlight design implications from Table 2 (corresponding to the number in the circle). Dotted lines (red) indicate screen changes due to clicking or tapping. Full color version available online.

Figure 6:

Diagram of offline “wound diary” mode, illustrating Design Implication 3. Due to benign symptoms, wound photos from days 1, 3, and 5 are stored but unmonitored; worsening symptoms from day 7 trigger an alert that pushes previously unmonitored photos for provider review to help distinguish between potential pattern #1 (problem) vs #2 (normal). See legend at top right.