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Patients’ Communication Of Health Status To Clinicians Using A Web Interface

RCHC D. Patients’ Communication Of Health Status To Clinicians Using A Web Interface Mary Segal, PhD Mark Weiner, MD Executive Director Assistant Professor Research Center for School of Medicine Health Care Decision-making, Inc. &

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Patients’ Communication Of Health Status To Clinicians Using A Web Interface

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  1. RCHCD Patients’ Communication Of Health Status To Clinicians Using A Web Interface Mary Segal, PhD Mark Weiner, MD Executive DirectorAssistant Professor Research Center for School of Medicine Health Care Decision-making, Inc. & Wyndmoor, PA Margaret Stineman, MD Associate Professor Research DirectorSchool of Medicine Good Shepherd Rehabilitation Hospital & Allentown, PA Julie Lytton School of Arts and Sciences University of Pennsylvania Philadelphia, PA Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 1

  2. RCHCD And Our Fellow Investigators For Patient-Enabled Electronic Medical Records: Michael Cheikin, MD Mary Klein, PhD Chestnut Hill Rehabilitation Hospital Moss Rehabilitation Research Institute Ralph Marino, MD R. Richard Schall, PhD Thomas Jefferson University Hospital Good Shepherd Rehabilitation Hospital Mary Schmidt, PT Richard Zorowitz, MD Magee Rehabilitation Hospital University of Pennsylvania School of Medicine Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 2

  3. RCHCD The age of the patient-enabled electronic medical record is here. Several programs are piloting this concept. Informal definition: The patient-enabled EMR is a web-accessible application that permits patients to post and monitor information about their health and functional status, in a format that is readily available to themselves and to their clinicians. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 3

  4. RCHCD Advantages of the patient-enabled EMR For clinicians: - Ability to track patients’ health status from the patients’ perspective regarding their experiences of illness, disability, and wellness. - A permanent record that can be examined and accessed with greater flexibility and efficiency than more traditional methods permit. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 4

  5. RCHCD Advantages of the patient-enabled EMR For patients: - Ability to take ownership of their health information and augment information available from their health care providers. - Opportunity to structure the physician-patient encounter in advance of an office visit according to their priorities. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 5

  6. RCHCD The Research Center has several NIH-funded projects currently underway in this area: Usability of the patient-enabled-EMR, using a “thinking aloud” protocol Test-retest reliability of responses on the patient- enabled EMR Correspondence of patient-enabled EMR responses to those obtained during a telephone interview Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 6

  7. RCHCD • Usability and issues related to patient acceptance and/or barriers • Format of the pilot application: • - 18 indicators in an inventory of physical functioning and disability • - 20 indicators in an inventory of mood and depression (CES-D scale) • - Feedback is provided to respondents after completion, ordered by indicator intensity Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 7

  8. RCHCD • Usability and issues related to patient acceptance and/or barriers • Format of the pilot application (2): • - Help is available for answer definitions • - Suggestions are offered for patient communication with clinicians • - Links are provided to web sites with information about disability and depression • - Site is password-protected and encrypted for data security and HIPAA compliance Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 8

  9. RCHCD Usability and issues related to patient acceptance and/or barriers Two alternative formats were tested for presentation of items: - A scrolling presentation, one screen for each inventory - Presentation of a single question per screen – multiple screens per inventory Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 9

  10. RCHCD Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 10

  11. RCHCD Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 11

  12. RCHCD • Usability and issues related to patient acceptance and/or barriers • Methods: • - A general rehabilitation sample of patients recently discharged from inpatient rehabilitation recruited from a consortium of six facilities in southeastern Pennsylvania • - Project staff tape an interview in the patient’s home while the patient accesses the web site. “Thinking aloud” by the patient with minimal cueing from staff is encouraged during the session. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 12

  13. RCHCD • Usability and issues related to patient acceptance and/or barriers • Methods (2): • - A variety of demographic and clinical indicators are also collected: age, educational status, frequency of internet use, intensity of disability • - Patients are called by a different staff member several days after completion and asked to evaluate the web site regarding usefulness and general ease of use. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 13

  14. RCHCD • Test-retest reliability • Format restricted to presentation of a single question per screen • Methods: • - Sample of orthopedic and joint replacement patients without cognitive deficits recruited from the consortium (offers best-case scenario for initial testing) • - Augmented with a sample of caregivers of neurologically-compromised patients; caregivers are asked about their own health and functioning. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 14

  15. RCHCD • Test-retest reliability • Methods (2): • - Respondent fills out application on the web, and is then locked out for five days. Respondent then fills out the same application a second time. • - Age and frequency of internet use is also recorded. • - As in the usability study, respondents are called several days after completion and asked to evaluate the web site regarding usefulness and general ease of use. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 15

  16. RCHCD • Correspondence of patient-enabled EMR responses to those obtained during a telephone • interview • Format restricted to presentation of a single question per screen • Methods: • - Sample of neurological patients’ caregivers without cognitive deficits recruited from MossRehab, one of the participating hospitals Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 16

  17. RCHCD • Correspondence of patient-enabled EMR responses to those obtained during a telephone • interview • Methods (2): • - Respondents fill out web-based inventory, and a staff member also interviews them by telephone survey within five days of completion of web responses (web and telephone orders are counterbalanced). • - Respondents are also asked by telephone interview to evaluate the web site regarding usefulness and general ease of use. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 17

  18. RCHCD Characteristics of respondents: Average age of patients: 55.6 years.  Educational status of patients: Half had college degrees or beyond; half were high school graduates or had some college. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 18

  19. RCHCD Characteristics of respondents (2): Average amount of time patients spent on the internet each week: 12 hours (4 on e-mail; 4 browsing; 4 in other activities such as games or shopping). Average number of years patients had been using the internet: 6.1. ► This sample was more highly educated than the average. Average caregiver age: 49.5. Did not differ from age of all eligible caregivers: 50.1. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 19

  20. RCHCD Study findings: Preferences for scrolling compared to one- question-per page formats. Of 20 respondents: 9 preferred one question per page 9 preferred scrolling 2 had no preference We found no differences by demographics, although there was a suggestion that those with higher educational status preferred one-question-per-page. Reasons for preferences were not always expected. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 20

  21. RCHCD Study findings: Aspects of the application considered most and least helpful. On a scale where “1” = not at all helpful and “5” = extremely helpful, the overall site rating was 4.1. The links to other web sites were judged the most helpful (4.36) and the information about communication with physicians and other clinicians was judged the least helpful (3.86). The survey questions were rated similarly to the overall site rating. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 21

  22. RCHCD Study findings:  Ease or difficulty in using the application. On a scale where “1” = very difficult and “5” = very easy, the overall site rating was 4.6. The easiest was the interview about physical functioning (4.8), while the most difficult to use was the interview about mood and depression (4.3). This appeared to be a function of the fact that many respondents recognized their mood was fluctuating day to day, and it was hard to follow the format and think about the week as a composite. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 22

  23. RCHCD Study findings: Attitudes towards accessing an application like this for respondent’s own benefit. On a scale where “1” = extremely likely and “5” = extremely unlikely, the overall site rating was 4.2. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 23

  24. RCHCD Study findings: Beliefs about whether respondents would favor sending responses tophysicians in advance of an office visit. On a scale where “1” = extremely favorable and “5” = extremely unfavorable, the overall site rating was 4.6. Comments focused on current communication and respondents’ concerns that such a web site be viewed as an add-on, not a substitute, for in-person office visits. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 24

  25. RCHCD Study findings: Concerns about data security over the internet. Perhaps unsurprisingly, respondents believed that data security posed few problems for applications such as this one, on the condition that it was password-protected, encrypted, and scale values of responses could not be traced back to the individual. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 25

  26. RCHCD Study findings: Test-retest correlations. Using a small sample of caregivers of patients with brain injury and stroke, test-retest correlations were .79 for the Locus of Control scale .66 for the CES-D Depression scale .84 for the Care-giving Burden scale, and .99 for the Social Support scale. Average interval between administrations = 7.9 days. The lower correlation for the CES-D is worth noting. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 26

  27. RCHCD Caveats in using web-based applications for patient-initiated responses.  Preferences for formats may differ in important ways that haven’t yet been identified. If mood scales are used, support should be available so patients aren’t left to cope on their own. Our sample saw more benefit in sending results to clinicians than in having the questionnaire for their own benefit. However, they appreciated the links. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 27

  28. RCHCD Next steps: Recruit a sample of patients with disabilities who require adaptive equipment, to understand barriers in this population. Pilot clinician acceptance and use. Pilot other kinds of inventories, and experiment with allowing patients to determine what inventories are used. Pilot use of the application at regular intervals during the post-discharge phase. Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 28

  29. RCHCD ► For more information, please contact: Mary Segal, PhD Executive Director Research Center for Health Care Decision-making, Inc. 8200 Flourtown Avenue, Wyndmoor, PA 19038 t: 215-233-9600 msegal@healthcaredecisions.org Patient-Enabled EMR Segal et al. HIT Summit West March 8, 2005 San Francisco 29

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