Patient-generated health data (PGHD) offers clinicians key insights useful in creating more timely, personalized interventions, especially when meaningfully and thoughtfully integrated into the electronic health record (EHR). Part 1 of our overview of the AHRQ report provided an overview of the AHRQ report, providing guidance to plan, implement, and support these programs. Folios 1-5 included defining PGHD; determining organizational readiness; assembling a change management team to integrate PGHD; choosing devices, data governance, and data security; and PGHD billing, reimbursement, and operational costs.
Part 2 gives a deeper look into Folio 6: steps to successfully implement a PGHD program, including my additions of time-tested quality improvement, project management, and change management principles alongside their practical steps for goal-driven PGHD program implementation.
Step one: Set realistic and measurable PGHD program goals
Successful implementation of PGHD begins with the time-tested principles of setting realistic and measurable goals, establishing scope, and proving initial success by conducting a pilot or proof of concept (POC).
An April 2020 piece in JAMIA reported on a survey of current and potential users of PGHD to catalog how PGHD is integrated into clinical care at an academic health center. The top-ranked goals included:
- Improving symptom monitoring and assessment between visits
- Personalizing interventions and monitoring plans
- Assess clinical outcomes
- Self-management and behavior change support
- Improving care delivery and quality assurance
Frameworks like SMART goals (specific, measurable, attainable/achievable, reasonable/relevant, and time-bound) are simple yet effective when incorporated at the project outset. Your PGHD workgroup should lead the process of secure collective buy-in on these goals.
Step two: Engage your patients
As the central actor in patient-generated health data, including patients (as discussed in Part 1), can be achieved via multiple strategies. One-on-one interviews, focus groups, and connecting through faith- and community-based organizations can maximize reach and provide diverse input. Regardless of the method you choose to solicit feedback and insights, elicit the group’s “WIIFM” - “What’s in for Me?”
- Focus on how their care can improve, as well as their family’s and peers’, by participating.
- Connect their healthcare desires to reasons they should participate.
- Determine any past experiences with PGHD and online, mobile, or wearable technologies.
- What support would they need to participate?
- Do they have access to reliable internet or broadband service?
- How could their participation address unmet healthcare needs in their community?
- Share what their participation would require and how much time they have available.
- Critically, be sure to address how privacy and security will be handled to protect their information and share it simply and clearly without technical jargon.
If possible, provide sample training to get a sense of how much training, time, and ongoing support might be needed that should be addressed in implementation and maintenance plans.
Step three: Update operational plans and workflows
Next, integrate the information gathered in the first two steps into operational documents, process manuals, and workflows. Standard swim lane diagrams and flowcharts are familiar and can be used for both high level and detailed visualization of process steps. Repurpose frameworks that were used when implementing the primary EHR or when significant upgrades or integrations (e.g., care management or SDoH data) were made. Tap into the experience of the EHR, IT, and project management office (PMO) teams that manage integrations and data-sharing.
Step four: Conduct a small-scale pilot or POC
Begin with an initial, small-scale pilot for rapid-cycle testing. The classic Plan, Do, Study, Act (PDSA) templates are accessible and effective. Pay particular attention to the “Study” phase to ensure that you capture learning from the experience before moving on to a new iteration or scaling further. Give equal importance to gathering experience and insights from both patients and staff.
Because all PGHD implementations occur in a local environment, your experience should drive how the next cycle is planned. While the number of PDSA cycles cannot be predicted, multiple cycles and pilots may need to be completed as part of preparations and testing for scale. Incorporating improvements with each iteration optimizes quality improvement and measurable outcomes.
Step five: Scaling from pilot to ongoing operations
Any new program can be perceived as a new burden or additional work steps, making training and communication vital when moving from a pilot to ramping up to larger patient populations and teams within the organization. Your messaging will shape resistance or adoption so take time to create a messaging brief.
- Highlight the measurable and immeasurable value to the organization, improvements to patient outcomes, and any WIIFM elements.
- Call out specific provider and patient examples from the pilot to demonstrate how PGHD improved clinical care, making it easier or more efficient.
- Reveal how patients realized their health and life goals, breaking down patient populations who were more tech-savvy, those who were skeptical, or required more training during the pilot.
- Be transparent about the obstacles you encountered and how the team overcame them, as well as how PGHD positively influenced clinical decisions, workflows, and processes.
Once scaled operations are underway, continue to communicate and share successes and measurable outcomes; stories and experiences from clinicians, patients, and other stakeholders. Hard data and personal reflections will prove the value to the organization, clinical care outcomes, patient lives, and their engagement.
Plan a successful PGHD pilot or prepare for scaling
Not all data is created equally. Even with the right data, designing and analyzing your own initiatives diverts resources away from patient care. Our team identifies the correct data points and statistical methods for each situation to deliver efficient and reliable findings every time. Ensure that your pilot is set up for success and that you’re scaling for adoption and quality improvement.
Learn more about the RTI Health Advance team and connect with us.