Patient Viewpoint: A Website for Patient-Reported Outcomes Assessment

1
Patient ViewpointA Website for
Patient-Reported Outcomes Assessment

• Claire Snyder, PhD
• Albert Wu, MD, MPH
• Johns Hopkins
• Schools of Medicine and Public Health

2
Presentation Objectives

• To present the results from a literature review
  and qualitative research study supporting the
  development of a prototype website for
  patient-reported outcomes assessment, including
• aspects of patient reported health that are
  useful to assess
• website features that patients and providers
  desire
• barriers that need to be addressed
• Prototype demonstration

3
Background (1)

• 2004 NIH Roadmap RFA Meetings and Networks for
  Methodological Development in Interdisciplinary
  Research
• applications for meetings or networks to develop
  methodologies that will facilitate
  interdisciplinary health research among
  behavioral or social scientists and investigators
  in the biomedical, mathematical/computational,
  physical sciences, and/or engineering

4
Background (2)

• Creation of the Quality of Life in Clinical
  Practice Interest Group within the International
  Society for Quality of Life Research
• Goals of using quality of life in clinical
  practice
• To improve clinician-patient communication
• To facilitate individual patient management
• To assist with medical decision-making

5
Research Proposal

• Creation of a network of internationally known
  researchers and practitioners to develop a
  centrally accessible website for patient-reported
  outcomes assessment that links to the electronic
  medical record

6
Goals of the Grant

• Determine what aspects of patient reported health
  would be most useful for evaluating the
  effectiveness and quality of outpatient oncology
  practice
• Explore desirable features for a web-based system
  to administer standardized questionnaires to
  patients
• Explore potential technical, cultural, ethical,
  and legal barriers to the use of such a system
• Develop a prototype website for use by outpatient
  oncology providers to collect patient-reported
  data in the clinical setting

7
Research Network Members

• Albert W. Wu, MD, MPH (Johns Hopkins University)
• Neil Aaronson, PhD (Vrije Universiteit, the
  Netherlands)
• Michael Brundage, MD, MSc (Queens University,
  Canada)
• Carolyn Gotay, PhD (University of Hawaii)
• James Hodge, JD (Johns Hopkins University)
• Denise Hynes, RN, MPH, PhD (Veterans
  Administration)
• Claire Snyder, MHS, PhD (Johns Hopkins
  University)
• John Wasson, MD (Dartmouth University)
• Susan Yount, PhD (Evanston Northwestern
  Healthcare/Northwestern Univ.)
• Brad Zebrack, PhD, MSW, MPH (University of
  Southern California)

8
Ably Assisted By

• J.B. Jones, MBA, PhD(c)
• S. Orion Courtin, MHS
• Roxanne Jensen
• Web Development Team

9
Methods

• Literature Review
• First Research Network Meeting (Oct 05)
• Develop Website Specifications
• Second Research Network Meeting (Apr 06)
• Website Design
• Qualitative Research
• Third Research Network Meeting (Feb 07)
• Website Development
• Usability Testing

10
Literature Review

• Rationale for web-based PRO assessment
• Existing electronic and web-based platforms for
  collecting PROs
• Desirable features from clinicians and patients
  viewpoint
• Potential ethical and legal issues

Jones et al. Quality of Life Research
2007161407-1417
11
Advantages of Web-Based PRO Assessment

• Patient can complete the assessment anytime from
  anyplace with Internet access
• Reminders and decision support can be built in
• Scoring is automatic
• Comparison scores immediately available
• Data is easily accessible (privacy and security
  issues)
• Summary reports can be generated at the patient
  level or practice level

Jones et al. Quality of Life Research
2007161407-1417
12
Desirable Features

• Efficiency and Ease of Use
• Will the website make efficiency better or worse?
• Will the website fit into clinical workflow?
• Will it add to my workload?
• Will patients have an easy time using it?
• Results Presentation and Interpretation
• What do the results mean?
• What should the clinician/patient do about them?

Jones et al. Quality of Life Research
2007161407-1417
13
Ethical and Legal Issues

• Privacy Rule
• Protected health information can only be
  disclosed with written authorization unless
  certain criteria for exemption are met
• Exemptions include public health research,
  minimal risk research that cannot be practicably
  done without a waiver
• Security Rule
• Defines the technical, administrative, and
  physical safeguards that must be put in place to
  protect the confidentiality, integrity, and
  availability of protected health information

Jones et al. Quality of Life Research
2007161407-1417
14
Patient Viewpoint

• A web-based system with a database back end for
  management and storage of patient responses
• Developed using Microsoft ASP.Net and SQL
  database
• Linked to the electronic medical record
• Three main functions provided by the system
• Clinicians select questionnaires to administer to
  patients and how often
• Patients enter responses, submit comments, and
  view the results of their response
• Clinicians have a text and graphical view of
  patients responses and scores over time
• Security
• Database and programming code located on separate
  servers
• Servers backed up regularly and backups stored at
  a remote location
• Secure Sockets Layer secure the site as patients
  enter their responses and physicians view the
  results
• Access to the system is controlled by requiring
  username and password

15
Qualitative Research

• Interviews
• 20 Cancer Patients
• 3 Oncologists
• 4 Research Nurses
• Semi-structured in-depth interviews
• Followed structure of the prototype website
• Probed for opinions, possible improvements, and
  innovations

16
Findings-Patients (1)
Keep surveys short and simpleI always have
questions for him about my well-being, but if it
becomes too long or too complicated, Ill give
up. Response Worked with physicians to choose
a concise package of measures to lower respondent
burden
17
Findings-Patients (2)
Present multiple questions per survey page, but
avoid long scrolling I would prefer multiple
questions, as long as theres not too
much. Response Will present questions with
same response type together on a page
18
Findings-Patients (3)
Some patients are interested in their survey
results, others just want to comply with the
request of their care provider Somebody is going
to find it interesting, but Im not, you know
personally, once Ive done the survey and made my
additional feedback, Im basically
done. Response Provide simple feedback for
patients who are interested
19
Findings-Patients (4)
Patients interested more in changes over time
than survey values It will be more meaningful
just to see the individual change. I want to be
able to look back six months and say, where was I
six months ago. Response Will generate simple
graphs showing change over time
20
Findings-Patients (5)
Patients suggest making direction of improvement
consistent across types of measures Id want
them to run in the same direction, with high
being bad and low being good. Thats like these
tests they give us, and you need to be
consistent. Response Explore options for
making results easy to interpret while keeping in
mind issues with violating conventions
21
Findings-Patients (6)
Patients want direct communication, want their
comments to inform the next visit, worried it
will not be read You need to go to your doctor
with questions in writing, and it seems that this
would be a vehicle to get those questions
there. I am concerned where you say that you
wont read it until the next appointment,, what
am I chopped liver or something? Response Will
keep the free text response and integrate it into
the clinician results
22
Findings-Patients (7)
Patients perceive the sites purpose as valuable,
concerned it will become burdensome It would be
useful from their point of view, so Id be
willing to take five minutes to fill out the
thing. Response Will clearly state the purpose
of the site, keep surveys short and continue to
improve usability
23
Findings-Clinicians (1)
Clinicians need guidance for interpreting the
meaning of values Of course I have no idea if
this is a good score or a bad score. Response
Will present results on commonly understood
dimensions for their patients on standard scales
24
Findings-Clinicians (2)
Clinicians are most interested in meaningful
individual change over time The individual
patient values would be more useful, I want to
know about this individual patient, some patients
will always score low, this doesnt represent
change over time, you cant always make a
miserable person better, is there something that
I can fix? Response Focusing results
presentation on individual changes over time,
exploring ways to determine what constitutes a
significant change for each measure
25
Findings-Clinicians (3)
Need ways to emphasize the key findings to focus
on during the visit Were all taught to fix the
one thing that the patient needs today, is there
one parameter that is tipping the scale, or are
they generally having trouble. Response Added
a question after each survey asking what a
patient would most like their care provider to
address at their next visit
26
Findings-Clinicians (4)
The website could be useful in clinical practice,
but it needs to be easy to integrate into current
routines with little administrative burden I
would want someone to print the information out
to be reviewed with the chart, or linked directly
in the EPR. I need something to hit me over the
head to indicate that theres something I need to
look at. Response Adding a batch print feature
to print results for patients based on
scheduling Response Working with Electronic
Patient Record personnel to integrate with their
system
27
Findings-Clinicians (5)
Initially we envisioned clinicians choosing from
a menu of surveys for each patient, but
clinicians were concerned about administrative
burden and lack of familiarity with different
surveys Response We conducted research to
narrow the choice of measures, then met with
physicians to choose the ones most appropriate to
their practice
28
Summary of Qualitative Study Findings

• Respondents optimistic about potential value but
  concerned about practicality and integration into
  current practice
• Use short surveys and a straightforward interface
  for patients
• Integrate results into the current clinical
  routine through the Electronic Patient Record or
  print for the paper chart
• In results presentation, both patients and
  clinicians were most interested in individual
  changes over time

29
Demonstration of Patient Website

• Patient visits site and logs in

30
Demonstration of Patient Website

• Patient receives welcome screen

31
Demonstration of Patient Website

• Patient is presented with disclaimer

32
Demonstration of Patient Website

• Patient is presented with survey(s) to complete

33
Demonstration of Patient Website

• Patient survey sample question

34
Demonstration of Patient Website

• Patient survey sample question

35
Demonstration of Patient Website

• Patient survey sample question

36
Demonstration of Patient Website

• Patient gets a last chance to answer skipped
  questions

37
Demonstration of Patient Website

• Patient completes survey and can ask their Doctor
  a question or view results

38
Demonstration of Patient Website

• Patient views results

39
Demonstration of Clinician Website

• Clinician logs in and can search for patient

40
Demonstration of Clinician Website

• Clinician can search for patient by survey

41
Demonstration of Clinician Website

• Clinician can view patients results

42
Demonstration of Clinician Website

• Clinician can search for another clinician

43
Demonstration of Clinician Website

• Clinician can add or edit a patient

44
Demonstration of Clinician Website

• Clinician can schedule a patient a survey

45
Demonstration of Clinician Website

• Clinician can add/edit another care team clinician

46
Next Steps

• Usability testing is ongoing
• R21 submitted to conduct initial pilot test
• Use
• Usefulness
• Acceptability

47
Questions?