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Patient Centered Care | Unit 9b Lecture
- 1. Patient-Centered Care Unit 9: Patient-Oriented Data Analytics Lecture b – Methods for Patient Engagement This material (Comp 25 Unit 9) was developed by The University of Texas Health Science Center at Houston, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0006. This work is licensed under the Creative Commons Attribution-NonCommercial-ShareAlike 4.0 International License. To view a copy of this license, visit http://creativecommons.org/licenses/by-nc-sa/4.0/.
- 2. Patient-Oriented Data Analytics Lecture b – Learning Objectives • Objective 1: Compare and contrast advanced methods of patient engagement, including social media, apps, patient portals, patient health records (PHRs), and other tools • Objective 2: Format clinical information for maximum patient understanding • Objective 3: Employ effective methods for engaging with patients regarding data analytics • Objective 4: Summarize key considerations for the collection of patient-reported outcome data • Objective 5: Delineate the benefits and challenges of utilizing patient satisfaction data for analytics • Objective 6: Identify the most appropriate data methods for reporting on the patient experience of care 2
- 3. Patient-reported Outcome Data • Patient-reported outcome (PRO): Any report of the status of a patient’s health condition that comes directly from the patient, without interpretation of the patient’s response by a clinician or anyone else. (U.S. FOOD AND DRUG ADMINISTRATION. Guidance for Industry. Patient-Reported Outcome Measures: Use in Medical Product Development to Support Labeling Claims. Federal Register 2009;74(35):65132-133.) 3
- 4. Considerations for Collecting and Using PRO • Informatics & Technology – Few criteria available for selecting valid and reliable PRO tools – Limited interoperability for PRO – Data silos remain, and – No standards exist for effectively using the data • Governance – HIPAA – both for collection and use – Allowing for patient choice – Lack of guidance 4
- 5. Considerations for Collecting and Using PRO (cont’d) • Analysis – Many different variables including settings, time, and so on – Bias from the patient – Does PRO add value for clinical care and research? – More research is needed on PRO measures • Implementation – Demonstrated utility of PRO tools and measures – PRO and the impact of clinical decision support need to be clarified 5
- 6. Patient Satisfaction Data • Benefits – Allows the patient and their significant others a voice – Enables comparison between providers – Patient satisfaction is correlated with higher quality of care • Challenges – Biased feedback – Multiple modes of data collection – Multiple uses – research and quality improvement – HIPAA 6
- 7. Reporting on the Patient Experience of Care • Private vs. Public Reporting – May impact provider willingness to treat certain patients – Patient use of data – must be accessible, understandable and relevant • Case-mix or severity adjustment 7
- 8. Unit 9: Patient-Oriented Data Analytics Summary – Lecture b • Many challenges remain for the effective collection and use of patient-reported outcomes data. • Patient satisfaction data is one necessary component of a complete health care quality measurement system. • While the patient experience of care can be valuable feedback for providers, improvements are needed to increase consumer use of the data. 8
- 9. Unit 9: Patient-Oriented Data Analytics Summary • There are three goal-oriented methods for patient engagement: – Provide patient with information – Encourage patients to take action – Improve patient-provider communication • Implementing patient-reported data is still a new area, but such patient satisfaction data has some value to clinics 9
- 10. Unit 9: Methods for Patient Engagement References – Lecture b References Agency for Healthcare Research and Quality. (2016). Building the Science of Public Reporting. Retrieved June 1, 2016, from http://www.ahrq.gov/professionals/quality-patient-safety/quality- resources/tools/sciencepubreport/index.html EDM Forum Community. (2013). Collecting and Using Patient-Reported Outcomes (PRO) for Comparative Effectiveness Research (CER) and Patient-Centered Outcomes Research (PCOR): Challenges and Opportunities. Retrieved June 1, 2016, from http://repository.edm- forum.org/cgi/viewcontent.cgi?article=1009&context=edm_briefs National Learning Consortium. (2014). Assessing Patient Experience with Care. Retrieved June 1, 2016, from https://www.healthit.gov/sites/default/files/assessing_patient_exp_factsheet.pdf Secretary, H. O. (n.d.). Final Guidance on Risk Analysis. Retrieved April 21, 2016, from http://www.hhs.gov/hipaa/for-professionals/security/guidance/final-guidance-risk- analysis/index.html 10
- 11. Patient-Oriented Data Analytics Methods for Patient Engagement Lecture b This material was developed by The University of Texas Health Science Center at Houston, funded by the Department of Health and Human Services, Office of the National Coordinator for Health Information Technology under Award Number 90WT0006. 11
Editor's Notes
- Welcome to Component 25, Patient-Centered Care, Unit 9, Patient-Oriented Data Analytics, Lecture B.
- The objectives for this session are to: Summarize key considerations for the collection of patient-reported outcome data. Delineate the benefits and challenges of utilizing patient satisfaction data for analytics, and Identify the most appropriated data methods for reporting on the patient experience of care.
- Let’s begin by understanding what patient-reported outcome data is. As defined by the United States Food and Drug Administration, a patient-reported outcome is any report of the status of a patient’s health condition, so it could be a health condition, that comes directly from the patient without any interpretation of the patient’s response by a clinician or anyone else. So there is no one interpreting their response. It’s simply the patient’s report of their health condition.
- So what are some considerations for collecting and using patient-reported outcomes (PRO)? There are four main areas and we will cover them here. The first one is informatics and technology. There are few criteria available for selecting valid and reliable patient-reported outcome tools. This is a new area in terms of outcome reporting so the tools are still being developed. There’s extremely limited interoperability for patient-reported outcomes. Again, if you don’t have tools you probably don’t have standards, so interoperability will be very difficult and data silos remain. So you may think of a data silo as existing between different care settings. It’s hard to use the patient-reported outcomes across care settings. Again, that’s an impact of the interoperability. Governance for the patient-reported outcomes is still new. Governance is still an issue for the patient-reported outcomes. HIPAA for both collecting the data, so maintaining the privacy and security of the data, how do you connect with the patient? How do you collect the data in a private and secure manner, as well as using the data? If you have patient-reported outcomes and you are trying to follow the patient longitudinally, how do you do that across care settings or across time in a private and secure manner? So there is that challenge. There are also issues of allowing for patient choice. This could get to the issues of are you interviewing them? Are you surveying them? How does the patient go about reporting on their outcomes in a way that is convenient and meaningful for them? And because this is a new area, there is a tremendous lack of guidance about patient-reported outcomes.
- The third area with considerations for collecting and using patient-reported outcomes is the analysis of the data. So there are many different variables for patient-reported outcomes and this includes, again, different care settings, different care settings for collecting the data, different times for collecting the data. When is the most appropriate time to collect the patient-reported outcomes? Is it within a week, a day? Is it a month later, year later, ten years later? Some of these may depend on what the condition is. There are many different variables that could impact patient-reported outcomes. Obviously, you could have bias from the patient. There is a question about whether people who may not be as satisfied with the care they received for reasons not specifically related to their health status may lower the report of their outcome. So for example, if I had to wait a very long time for an appointment, even though the care I received was very good if I’m very unhappy with that wait time, I might report a lower outcome. And then we are not exactly sure that patient-reported outcomes add value for clinical care and research. So much of the data we’ve used in healthcare historically has been generated from the clinicians. Using patient-reported data is still a very novel idea. And more research is needed on what are valid measures for patient-reported outcomes. For the analysis perspective of patient-reported outcomes, there are still many considerations that remain to be addressed. And then finally, when implementing patient-reported outcomes there has not been real demonstrated utility of patient-reported outcomes tools and measures and patient-reported outcomes as well as the impact of clinical decision support that need to be clarified. Implementing patient-reported outcomes is still a very new area.
- So patient-reported outcomes are actually on the health condition, and then there’s patient satisfaction data or the patient’s experience of care. Why would we even want to collect patient satisfaction data? Well, there are benefits to collecting the patient satisfaction data. Primarily, it allows the patient and their significant others to have a voice. Now, this is also gets to one of the challenges, which is that many of the people who take advantage of the ability to have that voice are the people who are either very happy with their care or very unhappy with their care. However, we do see that patient satisfaction data does enable comparison between providers. So even though you see this voice and you see the potential for biased feedback you still are able to compare findings between providers. And we do see that higher patient satisfaction is correlated with a higher quality of care. So many times those providers, who tend to score higher on the accepted quality of care measures tend to also have higher patient satisfaction scores. Challenges with patient satisfaction data- we have already discussed some of the biased feedback with people who are either very happy with their care or very unhappy with their care. You have multiple modes of data collection, it could be surveys, it could be electronic surveys, it could be paper surveys, it could be telephone interviews. So when you are doing the analysis of the patient satisfaction data, you have to take the mode of data collection into account. There are multiple uses of patient satisfaction data; it can be used for research and quality improvement. You need to be clear about the purpose in order to analyze it and use it appropriately. And finally with patient satisfaction data as with patient-reported outcomes, privacy and security under the HIPAA laws can be a challenge.
- So how do you report on the patient experience of care? Reporting on the patient experience of care is still very new in that there is private versus public reporting. Private reporting is preferred by most providers, while they may use it for internal quality improvement, they would really rather not have the public see how they do or how they are perceived by their patients at all times. When you start reporting the data publicly, you may see that providers are unwilling to treat certain patients or more challenging patients because they don’t want their scores to go down; they want their scores to stay high. And with public reporting the patient use of the data is really a new frontier, it must be accessible, understandable and relevant. However, all research to date has shown that patients often do not use the patient satisfaction data when they are choosing providers or otherwise trying to decide related to their own care. You also need to be concerned about the case-mix or severity adjustment when you are reporting on the patient experience of care to take very ill or very well patients into consideration with the reporting.
- This concludes Lecture b of Unit 9 Patient-Oriented Data Analytics. In summary, when reporting on patient engagement and using data analytics for patient engagement many challenges remain for the effective collection and use of Patient-reported outcomes data. We do believe patient satisfaction data is a necessary component of a complete health care quality measurement. And while the patient experience of care can be valuable feedback for providers, improvements are needed to increase the consumer use of the data.
- This concludes Component 25 Patient-Centered Care, Unit 9 Patient-Oriented Data. In summary, Unit 9 covers the three goal-oriented methods for patient engagement: One, provide patient with information, two, encourage patients to take action and three, improve patient-provider communication. Also Unit 9 covered patient-reported data. Though patient-reported data is still a new area for clinics and researchers, patient satisfaction data has shown some value to clinics.
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