The Power of Person-Generated Health Data: Five Ways to Improve the Care Experience

from AcademyHealth Blog at http://bit.ly/2JF99vz on October 31, 2019 at 05:10PM


The Power of Person-Generated Health Data: Five Ways to Improve the Care Experience

The use of technology in health care has improved many aspects of the way the health system works. Consumers can order prescription refills and schedule appointments online. Electronic health records (EHRs) allow clinicians to look up a person’s drug allergies and medical history in a fraction of the time it would take to locate that information in a paper record. Researchers from different institutions can combine many types of data (e.g., claims, lab test results, imaging) from many locations and look for patterns that help predict future illness and disease outbreaks in ways that were barely imaginable a decade ago. 

But one of the biggest challenges for tech integration also happens to be one of the most fundamental aspects of care – the interactions between care providers and patients, their families, and their caregivers. In a world where consumer technology such as smartphones and wearables is literally counting our steps, tracking our food purchases, and in some cases providing up to the minute bio stats on our heartbeats, blood sugar levels, and more, you might think technology would be making it easier for consumers to share important personal health information with their clinicians and care teams.

On the contrary, evidence on implementing EHRs finds that patients report feeling ignored by clinicians staring at computer screens instead of making eye contact, and rising clinician burnout rates are often attributed to poorly-designed software that does a better job documenting medical transactions for billing than providing clinical notes. Activated patients and caregivers who track personal health data find a lack of interest among most clinicians in reviewing their data, while clinicians report there is no time to review the data and no way to store it in EHRs. 

Given the many ways the care experience can be stressful or life giving for multiple parties involved, it’s critical that all of these diverse perspectives have an opportunity to align around shared goals and chart a course for progress.

Over the last year, AcademyHealth has been working with a diverse and representative group of people with a stake in the care experience. With support from a PCORI engagement award, we put together cross-sector teams of researchers, clinicians, caregivers, patients, and user experience designers, to co-author four papers that examine key questions about the care experience, and specifically about shared decision-making (SDM). We hope the answers will accelerate the adoption and use of consumer-friendly technology that leverages person-generated health data to improve the care experience. Our papers are currently undergoing peer review and we look forward to their publication in early 2020.

What do consumers want? 

After we started following the Patients Included criteria for conference engagement, AcademyHealth got to know many more consumers, patients, caregivers, and advocates who attended our meetings. For this project, we invited several of them to participate as members of our advisory group, co-authors and reviewers of the papers, and participants in two interactive workshops. All were eager to become more familiar with health services research (HSR), but we heard first-hand about the disconnect between what patients were interested in finding out about and what HSR has to offer. While we agreed on the value of taking an evidence-based approach to the project, we also realized that the research literature had many gaps not just because study findings were meager or mixed, but also because key questions had not been asked yet. We started both workshops with a group discussion on priorities for future research on SDM, in which all perspectives were valued equally to reach a consensus on what the papers should focus on.    

What does the research say?

Reviewing what is already known about SDM was step number one. A multi-stakeholder team reviewed the evidence around how people make decisions together and the role that patients and their families can play as a source of important data. As a part of this exercise, we traced the evolution of the definitions of SDM and made recommendations to evolve it further. Specifically, the team thought a future SDM model should combine person-generated data documented between health care episodes, combined with clinical data, to define care aligned with individual preferences to achieve optimal health outcomes. 

What roles does technology play?

A second team took a deep dive into the use of technology in SDM. They found a small but compelling body of literature demonstrating the application of information and communications technology to SDM, and made recommendations for priority topics for future research and development in this area. Chief among these is a charge to the research community to develop a framework for understanding co-production activities that can be supported by technology and highlight the factors that enable adoption. 

What are the policy issues at play? 

We know that there are several barriers to the use of data sharing and technology to improve the care experience. There is often a concern about data breaches or hacking incidents, which happen on a daily basis and discourage people from sharing their personal information. A third team examined data sources and potential sites of exchange of information, then outlined risks of unintended, unexpected, and unconsented data sharing. The team also took a closer look at the key policy challenges to facilitate SDM and made recommendations aimed specifically at protecting and leveraging person-generated health data.

How does the culture need to change?

Perhaps one of the most important aspects of SDM is defining the culture in which it can thrive. In the many meetings and calls we had with project participants, the issue of culture came up again and again – regardless of the person’s background or lived experience. Given this, a fourth group focused on the imperative for a new culture shift that embraces data, SDM, and health equity. The team examined three existing models that have helped redesign pivotal elements of the care experience and offered recommendations to achieve a renewed culture from building health experience literacy to engaging current and former family caregivers to augment the health care workforce.

As the need for SDM and the interest in interactive technologies increase, it’s imperative that we think strategically and holistically about how one can support the other to improve the sacred interaction between care providers, patients, families, and care givers. Stay tuned to the AcademyHealth blog for updates on the published papers. You can also learn more about this project by clicking here.

zenneia
Thu, 10/31/2019 – 12:59

Patient & Consumer Engagement

Using Health Data
Delivering Better Care

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Margo Edmunds, Ph.D.