Patients, families, caregivers are generating data outside of the health care setting. They are tracking exercise, symptoms, blood pressure. And they’re coming in for their appointments bearing stacks of printouts or their username and password on a little piece of paper and asking their clinicians to log in to their accounts and check out the goings on.
Clinicians, meanwhile, struggle to understand how to bring these data elements into provider environments so that the data can improve engagement and can improve care and outcomes. How can all this data be used to help patients better self-manage?
In this health care podcast, I speak with Vicky Tiase, a nurse informaticist and director of informatics strategy over at NewYork-Presbyterian Hospital. We talk about the opportunities to use patient-collected data, but mostly we discuss the barriers and how to overcome them. We also consider the flip side to this: a new CMS (Centers for Medicare and Medicaid Services) rule that mandates that providers must make provider-collected data available back to patients in a form of the patient’s choosing. How does that fit into this picture?
It’s interesting to observe that there’s at least two schools of thought emerging relative to which apps patients use. Or maybe a better way to put it: It’s less about two schools of thought and maybe more like two phases to a larger goal. One might come before the other. One school of thought concludes that provider organizations should prescribe apps, since it makes it easier on the back end to assimilate the data into clinical workflows and also hearkening back to the patriarchal origins of medicine—Doctor knows best and should tell the patient what to do.
The other school of thought concludes that patients should be able to pick their own apps that appeal to them.
The place that these two priorities merge is if apps are part of a trusted framework so that no one winds up with anything developed by Russian hackers, but yet the choice can still be left up to patients but within, like I said, this trusted framework.
Vicky will be speaking at the Digital Medicine Conference sponsored by NODE.Health. That event is coming up on December 9 in New York City. NODE.Health, by the way, stands for the Network of Digital Evidence. Look it up on the Web if you have questions. I will be at the Digital Health Conference. If you’re going to be there, too, let me know!
You can learn more by connecting with Vicky on Twitter at @vtiase
Victoria (Vicky) Tiase, MSN, RN, is the director of research science at NewYork-Presbyterian (NYP) Hospital. She has over 13 years of experience of giving clinical input to technology projects in all areas, especially regarding the implementation of the NYP electronic medical record. Vicky is responsible for supporting a range of clinical information technology projects related to patient engagement, alarm management, and care coordination. She was the nursing lead for the design, implementation, and rollout of an institution-developed personal health record (PHR), myNYP.org. She is passionate about finding data-driven, information technology (IT) solutions for increased patient and provider engagement in health care and leads research efforts to ensure the capture and presentation of data for the use and benefit of clinicians. Vicky serves on the steering committee for the Alliance for Nursing Informatics (ANI) and recently completed a fellowship in the ANI Emerging Leaders Program assessing nurse readiness to use health IT tools for patient engagement. She completed her master’s in nursing informatics at Columbia University and is currently pursuing a PhD from the University of Utah with a focus on the integration of patient-generated health data into clinical workflows.
03:04 What patients are looking for from their provider when they collect their own data.
03:29 The two categories of patients gathering data.
05:27 Patients looking to participate.
06:34 Encouraging a continuation of data collection while learning to use that data.
07:00 The importance of needing a feedback loop in patient data collection.
08:22 Why clinicians are confused about patient data and patient data barriers.
09:59 “It comes down to the data.”
11:00 The pieces of patient data that clinicians need to explore.
11:38 Understanding decision needs and understanding which data are going to be most valuable to clinicians.
12:26 Contending with the saturation of health data collection apps.
13:53 Empowering patients to use the app of their choosing, while vetting these apps.
15:13 What the ideal patient data collection looks like.
16:54 “Seamless data sharing.”
18:04 Are different patient data solutions necessary for different cohorts of care?
18:55 EP157 with Dr. Ethan Basch.
20:27 “It’s not just data that we’re looking at, but … data are translated into information, and from information … into knowledge.”
25:01 Vicky’s advice: Understand your organizational policies.
28:52 The best solutions for patients collecting and wanting to share their data from a variety of apps.
30:01 The need to think about consumer-directed exchange.
30:49 What Vicky’s looking forward to at the NODE.Health conference event.