eConsent Administer Focus Group Sessions Across Patient Population

Department of Health and Human Services (HHS)
The Office of the National Coordinator for Health
Information Technology (ONC)
eConsent Trial: Education, Collection, &
Evaluation of Patient Choice in the Electronic
Exchange of Health Information

Focus Group Session
Facilitator Script

Produced for the Department of Health and Human Services by:
APP Design, Inc.

Document Control Number 20120411
Version: 4
Version Date: April 17, 2012

Document Control
Date
April 11, 2012
April 12, 2012
April 14, 2012
April 17, 2012

Version
V1
V2
V3
V4

Document Revision Description
Initial draft of script content
Draft incorporating survey findings
Draft incorporating ONC comments
Additional revisions incorporating ONC comments

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Contents
Document Control ........................................................................................................................... ii 
Contents ......................................................................................................................................... iii 
1.0 

Introduction ......................................................................................................................... 1 

2.0 

Conducting the Focus Group .............................................................................................. 1 

2.1 

Getting Started with the Focus Group .............................................................................. 1 

2.1.1 

General Guidelines for Focus Group Facilitators ................................................ 2 

2.1.2 

Script: Information and Guidelines for Focus Group Participants ...................... 2 

2.2 

Script: Focus Group Educational Presentation................................................................. 3 

2.3 

Script: Focus Group Questions ........................................................................................ 4 

2.4 

Script: Concluding the Focus Group ................................................................................ 5 

3.0 

Focus Group Documentation .............................................................................................. 6 

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1.0

Introduction

As a component of the eConsent Trial project sponsored by the U.S. Department of Health and
Human Services (HHS), the APP Design Team will be conducting patient Focus Group sessions
in Western New York (WNY). We are working to develop and pilot eConsent education and
consent decision capture technology at several WNY Healthcare Provider facilities. Key to this
effort is the inclusion of patient input before, during, and after the trials to identify what patients
feel they require to make a meaningful decision, and to assess the knowledge gained and
satisfaction with the education and electronic consent (eConsent) capture pilot. This Facilitator’s
Script will provide specific information for Focus Group facilitators to achieve consistency in the
execution of each Focus Group session. A total of eight Focus Group sessions will be
conducted. There will be four sessions held at one selected facility and four sessions at another
facility.
The APP Design Team will coordinate patient Focus Groups to validate and explore findings
from the survey responses. After delivering general educational material, we will facilitate
discussion with the Focus Groups to qualitatively scope key factors identified from the survey
results. We will use “Paired Comparisons” techniques to assist patients in ranking the factors
when no consensus can be achieved. This technique enables the group to vote on a set of two
factors to determine which is more important in a focused manner. This process is repeated until
all factors have been compared, resulting in a prioritized set of factors. This approach is
effective in developing a consensus prioritization when confronted with a number of complex
alternatives. Through prioritization of key consent educational factors most important to the
patients, we will be able to be better structure the presentation of educational material for the
pilot to meet patient priorities.

2.0

Conducting the Focus Group

The Focus Group sessions are designed to elicit information from participants for the purpose of
verifying the information collected in the project’s February 2012 patient survey (OMB 09900376) and to gather any additional information which may be useful in developing the
educational materials and technology to be used in the eConsent pilot. Focus Group participants
will be asked a series of questions and their answers will be documented by Focus Group
facilitators.
Each Focus Group session will be an hour and a half in length. The first 15 minutes will be
comprised of the welcome remarks (see section 2.1.2) and the educational material (a
PowerPoint presentation), Understanding What Factors Are Most Important to Make Informed
Consent Decisions. Following the presentation, the discussion will be conducted for 60 minutes.
The final 15 minutes will be for wrapping up the session. Participants will be asked to arrive 5
minutes early to accommodate sign in and will receive the cash stipend at the conclusion of the
Focus Group session.

2.1 Getting Started with the Focus Group
To ensure uniformity and create an environment conducive to productive and informative
participant participation, we have developed the guidelines and scripts for the Focus Groups.
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There will be two facilitators at each session and a third facilitator who will serve as recorder.
The facilitators will be wearing name tags.
The facilitators will be given a list of participants for each Focus Group, which will contain the
location, time and participant name depicted in Table 1 below.
Location
WCA Hospital

Time
7:00am
7:00am
7:00am
7:00am
7:00am
7:00am
7:00am
7:00am

Name
Participant #1
Participant #2
Participant #3
Participant #4
Participant #5
Participant #6
Participant #7
Participant #8

Sign In

Stipend Receipt

Table 1: Focus Group Participant Contact Information
As participants enter the room, the facilitator will welcome and ask participants to sign in (see
table above). Pens and paper will be available for participants.
2.1.1 General Guidelines for Focus Group Facilitators
When facilitators conduct the Focus Group sessions, they will follow these guidelines:


Do not interrupt participants/respondents



Do not re-word their responses without permission and only to make the response more
clear



Assume that questions are really statements about what the participant thinks, and clarify
as needed



If participants have complaints, thank them for their comments and move on



If discussion goes too far afield, remind respondents what the last question was in an
attempt to re-direct



If there is silence, ask the question again



Try not to move too quickly through the questions



Be enthusiastic

2.1.2 Script: Information and Guidelines for Focus Group Participants
The facilitators will welcome the participants and provide general information up front. They
will guide each session accordingly:
Welcome, and thank you for taking time to attend this Focus Group. We plan to spend the first
15 minutes covering introductions and the educational material (a PowerPoint presentation), 60
minutes in a structured conversation, and 15 minutes to wrap up.

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A few house-keeping items before we commence:


Restrooms are located (insert detail by location)



Emergency exits are located at (insert detail by location)



Please help yourself to refreshments



Participation in this group is voluntary

A few ground rules as we begin:


We want to encourage everyone to participate



Please speak one at a time, and do not interrupt others



We will be documenting the discussion on the flipchart paper



No individual will be associated with any specific information

Any questions so far? If not, then let’s begin. [If yes, take note of the questions asked.]

2.2 Script: Focus Group Educational Presentation
The facilitators will then move into presenting the educational material (the PowerPoint
presentation) as follows:
Before we get started asking you questions, we need to be sure everyone is on the same page in
terms of information you already have, so let’s look at the slide presentation. As you watch and
listen to this presentation, we ask that you hold onto your questions until the conclusion of the
presentation. So please take note of any questions you may have and we will pause at the end to
take any of your questions.
The facilitators will present the educational material (the PowerPoint presentation).
Introduction: We are convening patient Focus Groups for the eConsent Trial project sponsored
by the U.S. Department of Health and Human Services (HHS). Our team, including
HEALTHeLINK, is working to develop and pilot eConsent education and consent decision
capture technology at several Western New York (WNY) Healthcare Provider facilities. HHS
would like to help patients better understand the choices they may have about allowing providers
to electronically share their medical information.
The facilitators will cover each slide of the education material (the PowerPoint presentation)
beginning with the goal and agenda. The facilitators will then provide a brief introduction of
themselves. The facilitators will then provide an explanation of how medical information may be
collected and accessed followed by an explanation of who is in the health information exchange
in Western New York. This explanation includes specifics on types of participants. The
facilitators will cover what type of information may be accessible. The facilitators will also
provide an overview of legal considerations. The facilitators will then cover who might have
access. The four consent options will then be covered.

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Conclusion: So why are you here? Your input will help us shape both the content and the
delivery method of providing this education to the patient population in your region in a future
pilot.
Any questions? [If not, proceed; and if yes, take note of the questions asked.]

2.3 Script: Focus Group Questions
Following the PowerPoint presentation, the facilitators will guide the conversation in each
session based on the following questions:
There are two main questions we want to ask, each of which has a series of sub-questions. As
you answer, we will be documenting your responses, and we will review our discussion at the
end of the Focus Group.
1. What information do you want before giving your providers consent to electronically
share your medical information? For this focus group, granting consent includes the
option to reject giving consent.
[Focus Group facilitators should ask the first general, open ended question, and document
any responses from participants on the flipchart. Allow for silence, ask several times if there
is anything else anyone wants to add. Next, ask each of the sub-questions, using the same
technique.]
If silence, provide the following prompts:
- HEALTHeLINK consent options
- Background information (e.g., HIPAA and HITECH)
[The facilitators will have a copy of the HEALTHeLINK consent form, and overviews of what
HIPPA and HITECH are.]
a. What do you want to know about why your provider may want to share your
medical information?
 What do you want to know about what happens after you grant consent?
b. What do you want to know about who might have access to your medical
information?
 What happens if someone misuses your information?
c. What do you want to know about which parts of your medical information would
be shared?
 What do you want to know about how your sensitive medical information
would be shared?
d. What do you want to know about how your medical information is kept secure
and confidential?
 What do you want to know about the laws related to sharing your medical
information?
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e. What else is important for you to know before you give your provider consent to
electronically share your medical information?
f. What comes to mind when you hear “access your health information” and “share
your health information?”
2. How do you want to receive the information you need before you give your provider
consent to electronically share your medical information?
If silence, provide the following prompts:
- Video on mobile device, specifically a tablet
- Brochure from provider
- E-mail from provider
- Video posted on Internet/Online/Website by provider
- Information posted on Internet/Online/Website by provider
[Focus Group facilitators — follow same directions as above.]
a. If you prefer to receive the information in a video on a mobile device, can you
explain why?
b. If you prefer to receive the information in writing in a brochure from your
provider, can you explain why?
c. If you prefer to receive the information in an e-mail from your provider, can you
explain why?
d. If you prefer to receive the information in a video posted online by your provider,
can you explain why?
e. If you prefer to receive the information in writing posted online by your provider,
can you explain why?
[Focus Group facilitators orally review the documentation on the flipchart and ask
participants using the same directions as above.]
f. Is there anything else you would like to add?

2.4 Script: Concluding the Focus Group
The facilitators will conclude each session with:
Thank you for participating in the Focus Group today. We greatly appreciate your time; the
information you have provided us will inform final recommendations for creating and delivering
educational material which will be used in a pilot to help patients better understand the choices
they have about allowing providers to electronically share their medical information.
Thank you again for your participation and involvement in this project.
Please collect your stipend and sign that you have received it as you exit the room (see Table 1
presented in earlier section of this document). [Note: Participants will receive the cash stipend
in an envelope.]

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3.0

Focus Group Documentation

The information gathered at each session will be documented in the following manner:
1.
2.
3.
4.
5.

All Focus Group sessions will be transcribed from the flipchart into a Word document.
Each session will be captured in a single Word document.
The Focus Group questions in Section 4 of this document will be used for all sessions.
The participants’ responses will be included in the document and saved.
Documents will be named “Date_Time_Facility. For example, if you have a session at
8:00 am on the 30th of April at WCA Hospital the name of the file would be:
20120430_0800_WCAVA.
a. Date is in the YYYYMMDD format.
b. Time is in 24 hour format (e.g., 0800 for 8:00 am, 1300 for 1:00 pm)
c. Facilities are either WCA Hospital or Buffalo VA Hospital.
6. Completed Focus Group documents will be saved on the APP Design Team’s SharePoint
site.

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