IPDAS Voting Document

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International Patient Decision Aid Standards(IPDAS) Collaboration

IPDAS Voting Document
February 1, 2005
Voting Document Editors: A O’Connor, G Elwyn, D Stacey
Voting Document Contributors
Steering Committee: A O’Connor (CA) & Glyn Elwyn (UK) (co-leaders) with A Barratt (AU),M Barry (US), A Coulter (UK), M Holmes-Rovner (US), N Moumjid (FR), H LlewellynThomas (US), M O’Kane (US), R Thomson (UK), D Stacey (CA), T Whelan (CA)Leaders of Quality Criteria Panels. A Barratt (AU), M Barry (US), P Butow (AU), A Clarke(UK), A Edwards (UK), V Entwistle (UK), D Feldman-Stewart (CA), M Holmes-Rovner (US),
Hilary Llewellyn-Thomas (US), N Moumjid (FR), A Mulley (US), A O’Connor (CA), C Ruland(NO), K Sepucha (US), T Whelan (CA),Methods Group: G Elwyn (leader, UK) with S Bernstein (US), P Shekelle (US), R Thomson(UK), R Volk (US)Background Document Contributors:
Quality Criteria Panels: A O’Connor (CA) & Hilary Llewellyn-Thomas (US) (editors) with J
Austoker (UK), A Barratt (AU), M Barry (US), H Bekker (UK), J Belkora (US), C Braddock(US), P Butow (AU), E Chan (US), A Charvet (Switz), A Clarke (UK), J Davison (CA), J Dolan(US), A Edwards (UK), V Entwistle (UK), A Fagerlin (US), D Feldman-Stewart (CA), J Fowler(US), D Frosch (US), P Hewitson (UK), M Holmes-Rovner (US), T Hope (UK), MJ Jacobsen(CA), A Kennedy (Switz), S Knight (US), M Kupperman(US), B Ling (US), T Marteau (UK), K
McCaffery (AU), N Moumjid (FR), A Mulley (US), M O’Connor (US), E Ozanne (US), M
Pignone (US), A Raffle (UK), C Ruland (NO), L Schwartz (US), K Sepucha (US), S Sheridan(US), S Stableford (US), D Stacey (CA), D Stilwell (US), V Tait (CA), D Timmermans (NL), L
Trevena (AU), T Whelan (CA), C Wills (US), S Woloshin (US), S Ziebland (UK)IPDAS Voting Document

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Table of Contents
Introduction
Instructions for Voting
Tell us about yourself

Page
3
4
5

Voting Criteria
I

Using a systematic development process

6II

Providing information about options

7

III

Presenting probabilities

9

IV

Clarifying and expressing values

12

V

Using personal stories

13

VI

Guiding/Coaching in deliberation and communication

14

VII

Disclosing conflicts of interest

15

VIII

Delivering decision aids on the Internet

16

IX

Balancing the presentation of options

17

X

Using plain language

18

XI

Basing information on up-to-date scientific evidence

19

XII

Establishing the effectiveness20

Glossary21

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Introduction
The International Patient Decision Aid Standards (IPDAS) Collaboration is made up of people fromaround the world who design, test, compile, provide, or use patient decision aids. Their common interest
is to reach agreement about how to judge the quality of a patient decision aid. The leaders of the IPDASCollaboration are Professor Annette O’Connor in Canada and Dr. Glyn Elwyn in the United Kingdom.
Why are standards needed?
The Cochrane Review Team compiled over 500 patient decision aids in use or being tested. However
without standards (or a set of criteria), it is difficult to know whether or not a particular patient decision
aid is a good one.
What are patient decision aids and why are they needed?
Patient decision aids are tools to help patients participate in their health decisions in ways that they
prefer. Patient decision aids are used when there is more than one medically reasonable option todiagnose or treat a health problem. Each of the options has good and bad features that patients value
differently. Even when two patients are in the same situation, what is important for one person may bedifferent for another person. Therefore, there is no clear choice that applies to everyone. The best choice
involves matching which features matter most to a person with the option that has these features. To
make a good decision, you need an expert on the facts (e.g. a health practitioner), an expert to whom thefeatures matter most (e.g. the patient), and a process that helps these two experts talk to each other.
Patient decision aids can help with that process.
Patient decision aids aim to do three things to prepare a person for decision making.
• They provide facts about a person’s condition, the options, and their features.
• They help patients to clarify their values (the features that matter most to them).
• They help patients to share their values with their health care practitioner and others, so a courseof action can be planned that matches their values.
Patient decision aids do not advise patients to choose one option over another. They do not replacecounseling from a health care practitioner. Instead, they prepare patients to discuss the options with theirhealth care practitioner.
An international group of researchers, known as the ‘Cochrane Review Team of Patient Decision Aids’
is compiling decision aids and summarizing the results of research trials. The latest review of 34 studies
shows that patients and practitioners who use patient decision aids make better decisions. Patients
participate more, know more, and have more realistic expectations of what might happen. They are more
likely to receive an option with features they most value (O’Connor et al., Cochrane Library, 2003).
What is the goal of the IPDAS Collaboration?
The goal is to reach agreement on a set of criteria that will help patients judge the quality of patientdecision aids. These criteria will be helpful to a wide variety of patients and organizations from aroundthe world that use or develop patient decision aids. For example, the set of criteria will help patients whoface the decision, practitioners who counsel them about the decision, patients who design and test
decision aids, and patients who deliver or make decisions about purchasing decision aids for the public.

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Instructions for Voting on Paper Version
Please plan to take about 45 to 60 minutes to complete the voting document. If you have any questions,please do not hesitate to contact the IPDAS Collaboration at IPDAS@ohri.ca.
1. Read the summary for the broad category of criteria (e.g., using a systematic development
process)
2. Vote on the criteria by rating how important each criterion is to you when judging the quality ofa patient decision aid:From

1 = low importance to 9 = highly important

3. Continue with the next set of criteria
4. When you have voted on all of the criteria, please fax the completed document to IPDASCollaboration (613) 761-5402.

Privacy statement
The information collected during this voting process will be kept confidential. A code number will be
used to identify the information so your name will not appear on any publications. All relevant
information obtained while you are voting will only be made available to the research team and, if
requested, to the Research Ethics Committee at Baylor College of Medicine, Houston, Texas. If theresults of the study are published, your name will not be associated with the data.

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Tell us about yourself
1. What is your gender?
□ Male□ Female
2. What is your profession? ___________________________
3. What is your experience with decision aids? (select one)
□ none□ limited (I’ve used or developed 1 decision aid or topic)□ experienced (I’ve used or developed 2 or more decision aids or topics)
4. Which of the following groups describes you? (check all that apply)□ decision aid developer□ health professional□ patient□ member of a patient consumers group□ policy maker□ researcher□ health plan executive□ other, please specify _________________
5. In what country do you reside? __________________

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I. Using a systematic development process
What is this criterion? The logical steps taken to build a patient decision aid. Steps may include:• To form groups to develop decision aids (decision experts, patient users, practitioner users);• To identify the needs of potential users;• To draft, review, field test, and revise the decision aid;
• To have the decision aid reviewed by outside experts who were not involved in its development
and field testing.
How might this affect the quality of decision making? In theory, decision aids may lead to poor
decisions if they are developed by people who do not have the knowledge and skills to understand thedecision situation and to help patients make decisions. Even qualified people may not design a gooddecision aid, if they do not take the time to develop it to meet the needs of the patients who face thespecific decision and the practitioners who counsel them about the options. Outside experts may also
help to identify things that were missed during development.
What is the evidence to support including or excluding this criterion? The Cochrane Collaboration
review team examined the way 19 decision aids were developed. Of these, 17 reported the credentials of
the developers (e.g. MD, RN, PhD), and 11 reported on the steps taken to develop the decision aid.
There were no studies comparing different ways of developing patient decision aids.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

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1. The patient decision aid has information about the credentials of
the people who developed it.

notimportant

2. Patients were asked about what they need to prepare them todiscuss a specific decision.

notimportant

3. Practitioners were asked what they need to discuss a specificdecision with patients.

notimportant

4. Patients who were facing the decision field tested the decision
aid.

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important

5. Practitioners who counsel patient on the options field tested thedecision aid.

notimportant

6. Field testing showed that the decision aid was acceptable topatients.

notimportant

7. Field testing showed that the decision aid was acceptable topractitioners.

notimportant

8. The decision aid was reviewed by outside experts who were not
involved in its development or field testing
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NOTE: Criteria about the effects of decision aids on the quality of decision making are presented later□
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II. Providing information about options
What is this criterion? Giving the facts about the positive and negative features of the different choices
to test or treat a health problem. This may include: what the procedure involves; possible benefits andadvantages; and possible harms, side effects, or disadvantages. It may include the benefits and harms of
not being tested or treated. In the case of medical tests (to screen or diagnose), facts may be given about
what the positive or negative results might mean and what further tests or treatments might be required.
It may also include facts about ‘over-detection; this happens when a disease is found that would nothave been diagnosed or caused symptoms within a person’s lifetime had the person not been screened.
How might this affect the quality of the decision? In theory, decision aids may lead to poor decisions if
the facts given are incomplete or superficial. For ethical and legal reasons, patients have the right to getfull and accurate information before giving their consent to a medical test or treatment. For patientsactively involved in choosing options, more detailed information about options may be needed.
What is the evidence to support including or excluding this criterion? In the Cochrane Collaboration
review, all 19 patient decision aids provided information about the condition, the options, the benefits,
and the harms. The amount of information given varied. In studies that tested patients’ knowledge,
patients who used decision aids had knowledge scores of 48 to 95% correct, compared to scores of 31 to67% correct among patients who received standard care without decision aids. Patients who used patientdecision aids also felt more informed about their options.
How important are the voting criteria that apply to healthcare options (tests andtreatments) in judging the quality of a decision aid? (circle your response)□
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1. The patient decision aid describes the health condition related
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2. The patient decision aid lists the health care options.
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3. The option of choosing none of the health care options is
included
4. The patient decision aid describes what happens in the natural
course of a health condition if none, of the health care options,is chosen.
5. The patient decision aid has information about the procedures
involved (e.g. what is done before, during, and after the healthcare option)
6. The patient decision aid has information about the positive
features of the options (e.g. benefits, advantages)

important

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7. The patient decision aid has information about negative
features of the options (e.g. harms, side effects, disadvantages)

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8. The information about features of options (positive andnegative) includes the chances they will happen.

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9. The patient decision aid has information about what the test is
supposed to measure.

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How important are the voting criteria that apply to healthcare options (tests andtreatments) in judging the quality of a decision aid? (circle your response)□
10. The patient decision aid has information about the chances of123456789
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11. The patient decision aid describes possible next steps based on
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12. The patient decision aid has information about the chances ofUnable tonotverydisease being found with and without screening.
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III. Presenting probabilities
What is this criterion? A ‘probability’ is the chance or likelihood that something will happen. It could
mean the chance of a disease, benefit, harm, or side effect. It is often estimated by seeing what happens
to large groups of patients in the natural course of the disease or after they have tests or treatments. The
groups are usually defined by a disease or condition. Sometimes probabilities are described according tofactors that change one’s chances (e.g. age, sex, severity of disease, presence of other health problems).
Probabilities can be presented as words, numbers, or pictures. Some of the criteria are there to make iteasier to compare probabilities and some to make it easier to imagine the probability.
How might this affect the quality of the decision? In theory, decision aids may lead to poor decisions if
the probabilities are miscalculated or presented in ways that are misleading. Probabilities are usuallybased on research studies and calculated by experts in statistics and modeling. Decision aids on the same
topic sometimes use different numbers so it may be helpful to identify the source of the probabilities andthe steps used to calculate them. The different ways to present probabilities are discussed below.
Describing probabilities: It is easier to understand the number of times something happens in a group(known as ‘event rates’) than using other ways of presenting probabilities. To illustrate, identicalinformation about probabilities is presented below using different methods:•

event rates: “If 1000 patients are treated our best guess is 2 patients may die. If 1000 patients are
not treated our best guess is 4 patients may die”
• relative risk reduction “Our best guess is that treating patients cuts the chances of dying in half(by 50%) compared to no treatment”;• absolute risk reduction “Our best guess is that treating 1000 patients prevents 2 patients fromdying compared to no treatment”• number need to treat: “Our best guess is that you have to treat 500 patients to prevent one death”.
Consistent denominators. It is easier to understand options when the same denominator (the bottom
number in a fraction) is used. Most patients understand that ‘4 out of 1000’ is a higher chance ofsomething happening than ‘2 out of 1000’. Many patients do not realize that ‘1 out of 250’ is a higher
chance of something happening than ‘2 out of 1000’.
Same time frames. It is easier to compare options when probabilities are presented using the same timeframes. For example, it is difficult to decide about an option if you are told “If 1000 patients are treated,
2 patients may die within 10 years; if 1000 patients are not treated 4 patients may die within 5 years”.
Balanced framing of probabilities. Patients feel differently about options when the probability of dying
is presented (4 patients out of 1000 may die) compared to the probability of living (996 patients out of1000 may live). By using both frames (4 may die and 996 may live), patients may be less likely to focus
only on the positive or negative information.
Using visual aids. Some patients find it easier to understand probabilities when they are displayed using
faces, stick figures, or bar charts. Visual aids comparing options should also use consistent denominators(e.g. what happens to 1000 figures without treatment compared to 1000 figures taking treatment).
Similarly, two bar charts comparing options should use the same scale for comparison, starting fromzero and increasing by the same amount (e.g. both charts show increases by 50 patients up to 1000
patients).
Comparisons to the rates of other events. Very small chances of unfamiliar events (e.g. 1 in 10 million
chance of dying from a complication) are difficult to comprehend. It may help to compare the chances ofa rare unfamiliar event to those of more familiar situations (dying from crossing the street, being struckby lightening, childbirth, any cause).

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What is the evidence to support including or excluding this criterion? In the Cochrane Collaboration
review, 17of 19 patient decision aids presented probabilities and 3 described the uncertainty associatedwith the evidence. The methods of displaying probabilities varied. In all 3 studies comparing decision
aids with and without probabilities, the number of patients out of 100 reporting probabilities that wererealistic, was higher if they used a patient decision aid with probabilities (63-72% correct) than a patientdecision aid without probabilities (43-46% correct).
How important is this criterion in judging the quality of a decision aid?
(circle your response)

1. The patient decision aid presents probabilities using event rates
in a defined group of patients for a specified time.
2. The patient decision aid compares probabilities of options
using the same denominator.
3. The patient decision aid compares probabilities of options overthe same period of time.
4. The patient decision aid describes the uncertainty around theprobabilities (e.g. by giving a range or by using phrases such as‘our best guess is’).
5. The patient decision aid uses visual diagrams to show the
probabilities (e.g. faces, stick figures, or bar charts).
6. The patient decision aid uses the same scales in the diagrams
comparing options.
7. The patient decision aid provides more than one way of
explaining the probabilities (e.g. words, numbers, diagrams).
8. The patient decision aid allows patients to select a way ofviewing the probabilities (e.g. words, numbers, diagrams).
9. The patient decision aid allows patients to see the probabilitiesof what might happen based on their own individual situation.
(e.g. specific to their age or severity of their disease).
10. The patient decision aid places the chances of what might
happen in the context of other situations (e.g. chances ofdeveloping other diseases, dying of other diseases, or dying
from any cause).
11. The patient decision aid has a section that shows how the
probabilities were calculated.
12. If the chance of disease is provided by sub-groups, the patientdecision aid describes the tool that was used to estimate therisks.

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How important is this criterion in judging the quality of a decision aid?
(circle your response)

13. The patient decision aid presents probabilities using both
positive and negative frames (e.g. showing both survival rates
and death rates).
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IV. Clarifying and expressing values
What is this criterion?: A 2-step process of first thinking about and then communicating the personal
importance of different positive and negative features of options. Ways of helping patients to clarify andexpress their values may include:• describing features of options in ways that helps patients imagine what it is like to undergo
procedures and to live with the physical, emotional, and social consequences;• providing examples of how different values may lead to different choices;• helping patients rate or trade-off different features of the options;• recording and sharing values with others involved in the decision.
How might this affect the quality of the decision?: In theory, there may not be a good fit between whichfeatures matter most to the patient and the option that is chosen if patient decision aids only help patients
to consider the facts and not personal values.
What is the evidence to support including or excluding this criterion?: Of 19 patient decision aids
included in the Cochrane Review, all 19 described the features of the options but in varying levels ofdetail; 14 provided examples of different patients’ values; 8 guided patients to rate or trade-off different
features of options; and 9 suggested ways to share their values with others.
Of the 3 studies that measured the fit between a patient’s values and their choice, all 3 showed an
improved fit after using a patient decision aid. Ten studies measured how clear patients felt about theirpersonal values. Six of these studies showed that decision aids were better in helping patients feel clear
about their values (2 to 17 points out of 100) and the other 4 studies found no differences.
It is not clear how many ways of clarifying and expressing values should be in a decision aid or which
way is best. When decision aids describe the features of options only briefly, having more than one way
helps. When decision aids describe features in detail (e.g. options’ effects on a person’s physical,
emotional, social situation), more ways may not be more helpful.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

1. The patient decision aid describes the features of options to
help patients imagine what it is like to experience their
physical, emotional, and social effects.
2. The patient decision aid asks patients to think about which
positive and negative features of the options matter most tothem.
3. The patient decision aid suggests ways for patients to sharethe most important features of the options with others whoare involved in the decision.
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V. Using patient stories
What is this criterion? Describes the experiences of other patients who have faced the decision. Stories
may include living with the condition, going through the steps of decision making, or living with theconsequences of their choice.
How might this affect the quality of the decision? Some patients find stories more meaningful thanfactual information. However, the way patient stories are selected may sway (or bias) a patient’s
decision, divert patients from the facts, or not represent the different views of patients.
What is the evidence to support including or excluding this criterion? Of the 19 patient decision aids in
the Cochrane Review, 14 provided patient stories. No studies compared decision aids with patient stories
to those without stories.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

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1. The patient decision aid provides stories of other patients’experiences.

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2. The patient decision aid provides stories that represent a
range of experiences (positive and negative).

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3. The patient decision aid explains the steps used to selectthese stories.

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4. The patient decision aid explains how experts reviewed theinformation contained in these stories.

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5. The patient decision aid describes that the patients gave
informed consent to include their stories.
Comments:

Note: balance in stories is discussed in a later section.

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VI. Guiding/Coaching in deliberation and communication
What is this criterion? Both guidance and coaching provide a step-by-step way of thinking about theoptions and discussing them with their practitioner. Guidance is provided within a patient decision aid. It
may be implicit in the way the patient decision aid is organized or explicit by providing a list or
worksheet outlining the steps. ‘Coaching’ is provided in-person, one-on-one, by a trained person who is
supportive but neutral in the decision. It may be given before or after using a patient decision aid, or as
part of the delivery of one.
How might this affect the quality of the decision? Patients are not able to participate in decision making
about health care options if they lack skills in the process of thinking about a decision and discussing itwith others. Those without these skills may benefit from guidance or coaching in a step by step process.
What is the evidence to support including or excluding this criterion? Of 19 patient decision aids in the
Cochrane Review, 17 studies provide guidance and/or coaching. One large study found that coachingalong with a patient decision aid was more cost-effective and improved patient satisfaction compared tousing the decision aid alone or using neither coaching or the decision aid. In other studies, it was notpossible to identify the effects of guidance and coaching separately from other parts of a decision aid.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

1. The patient decision aid provides a step-by-step way to makea decision.
2. The patient decision aid suggests ways to talk about thedecision with a health practitioner.
3. The patient decision aid includes tools like worksheets orlists of questions to use when discussing options with apractitioner.
4. The patient decision aid offers the option of working with a
trained ‘coach’ to help patients consider the options.
5. The patient decision aid offers the option of working with a
trained ‘coach’ to help patients prepare to talk about thedecision with a practitioner.
Comments:

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VII. Disclosing conflicts of interest
What is this criterion: To be open and honest in stating: the funding source for creating and producing patient decision aids,
 the financial support for practitioners who are responsible for creating the patient decisionaid, and the affiliations of patient decision aid developers that might influence the content of patientdecision aids.
How might this affect the quality of the decision? Often, decisions about medical tests or treatments
have financial implications for practitioners, their institutions, and for commercial companies that makeand sell related products. In theory, these financial interests may influence the content of a patientdecision aid, particularly when individuals or groups who stand to gain (or lose), are involved with
developing the patient decision aid. By clearly identifying individuals or groups involved who have apotential financial interest in the content of the patient decision aid, patients can decide for themselves
whether or not the content is biased.
What is the evidence to support including or excluding this criterion? Of the 131 patient decision aids in
the Cochrane review, 126 provided information on the funding sources. There have been no studies
showing whether funding sources or affiliations are likely to influence the content of patient decision
aids. However, in medical publishing and professional organisations there is strong evidence to suggestthat financial interests and specialty advice can bias the information provided.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

1. The patient decision aid reports where the money came fromto develop the decision aid
2. The patient decision aid reports where the money came fromto copy and distribute the decision aid.
3. The patient decision aid reports whether the authors of thedecision aid stand to gain or lose by the choices patientsmake after using a decision aid.
4. The patient decision aid reports whether the affiliations of
the authors stand to gain or lose by the choices patients makeafter using a decision aid.
5. If the patient decision aid includes stories of other patients’experiences, it reports if there was some financial or otherreason why patients decided to share them.
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VIII. Delivering patient decision aids on the Internet
What is this criterion? One of several formats that can be used for a patient decision aid. The Internet isthe use of a global network of millions of computers. Putting patient decision aids on the Internet makes
them available to patients around the world.
How might this affect the quality of the decision? Increasingly, patients use the Internet to find healthinformation for making decisions. Most decision aid developers are making aids for the Internet. The
advantages are: widespread access by practitioners and patients; ability to tailor to each patient; costsavings in distribution; ease in updating; and stopping the circulation of out of date material. However,
not all patients have access to or use the Internet. Internet-based patient decision aids may be more
usable if they are simple to use, organised in a logical way, easy to search, interactive, and offer links toother helpful information.
What is the evidence to support including or excluding this criterion? Over the last 5 years, there has
been a steady increase in the use of the Internet as the medium of delivery for patient decision aids.
Currently over 98 of the 131 available patient decision aids in the Cochrane Review Inventory are on theInternet. Only one study compared the use of the Internet to another format (video-cassette). This study
found that both formats were acceptable, and that patients who reviewed either decision aid in their
entirety, improved their knowledge. However, the study also found that patients were more likely toview the patient decision aid when assigned to watch the video at the doctor’s office just before their
appointment, compared to using the Internet patient decision aid at home.
How important is this criterion in judging the quality of a decision aid?
(circle your response)
1. The patient decision aid provides a step-by-step way to movethrough the web pages (screens) on the Internet.
2. The patient decision aid website allows patients to search for

key words in the decision aid.
3. The patient decision aid provides feedback on personal
health information that is entered into the decision aid.
4. The patient decision aid website provides security for
personal health information entered into the decision aid.
5. The patient decision aid makes it easy for patients to findtheir way back to the point they were at in the decision aid
when they clicked on links to other web pages.
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IX. Balancing the presentation of options
What is this criterion? Using equal importance and level of detail to display information about thepositive and negative features of options. Some ways to look at the balance of positive compared tonegative features is to look at:
 The format for options: the font, spacing, layout, volume of sound, and amount of airtime; The order each is discussed; and The framing of the options in terms of adjectives used and the display of numbers andstatistics
How might this affect the quality of the decision? The way information is presented affects how patients
see their health and how they make decisions. In theory, unbalanced information may influence patients’
understanding, expectations, and value judgments about the options. As a result, patients may selectoptions that would not be acceptable if they had been presented in a balanced way. It is dishonest andunethical to create false expectations or make it difficult for patients to understand the probabilities (orchances) of positive or negative features of options.
What is the evidence to support including or excluding this criterion? Of 19 patient decision aids in the
Cochrane Review, all of them present both the harms as well as the benefits. However, only 4 of 19
patient decision aids were evaluated to find out if patients thought they provided balanced information.
In these 4 studies, 60 to 79% of patients rated the patient decision aids as completely balanced, while theothers rated the aids as slanted in favour of one option. However, patients who found the patientdecision aids slanted were more likely to be leaning toward a particular option before using the decisionaid. The patient decision aids have not been evaluated for balance in format, order, or framing of
information.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

1. The patient decision aid makes it possible to compare thepositive and negative features of the available options.
2. The patient decision aid shows the negative and positive
features of options with equal detail (for example using
similar fonts, order, display of statistical information).
3. Field testing showed that undecided patients felt the
information was presented in a balanced way.
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X. Using plain language
What is this criterion? Ways to share health information that promote understanding and improvereadability for all audiences, including those with limited health literacy. This includes the use of
everyday language and information that is structured, flows logically, and is focused; as well as, follows
guidelines for document design. Readability is one measure of the reading ease or difficulty of text,
expressed as a ‘grade level’ score. Some valid measures of readability include SMOG and FRY.
How might this affect the quality of the decision? In theory, decision aids may lead to poor decisions if
most patients cannot read understand and use the information. Patient decision aids that use plain
language make it easier for patients to learn about their options.
Common factors that limit understanding include: being unfamiliar with health terms and language,
having limited reading skills, and aging. For example, the average US adult reads at the 7th or 8th gradelevel. Even patients with above average reading skills may be limited by emotional distress or
medications that affect thinking abilities.
In general, people are able to understand spoken language at about two grade levels higher than written
language. Patient decision aids with spoken words (audio, video, in person discussion) may be easier tounderstand.
What is the evidence to support including or excluding this criterion? The Cochrane review of patientdecision aids found no studies that tested the effect of readability of the text on the quality of thedecisions made. Health literacy studies found that improved "reading ease" of written materials
increases understanding.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

1. The patient decision aid describes the ‘professional standards
for plain language materials’ that guided its development(e.g. Plain Language Association International)
2. The patient decision aid identifies the reading level at which
it is written and the formula used to determine the level.
3. The patient decision aid is written at a level that can beunderstood by at least half of the patients for whom it isintended.
4. The patient decision aid is written at a level no higher thangrade 8 according to a readability formula such as SMOG or
FRY.
5. The patient decision aid provides ways to help patients
understand information other than reading (e.g. audio, video,
or in-person discussion).
6. Field testing showed that the patient decision aid wasunderstood by patients with limited reading skills.
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XI. Basing information on up-to-date scientific evidence
What is this criterion? The use of up-to-date research from the best available scientific studies. This may
include:• using standard systematic steps in selecting the evidence• judging the quality of the studies• describing how consistent the results are among studies• reporting how similar the patients in the studies were to those who would use the patientdecision aid.
• recording the sources of evidence• updating the evidence regularly
How might this affect the quality of the decision? In theory, decision aids may lead to poor decisions if
they contain information from studies that are inaccurate, biased, incomplete, out-dated or are based on
patients who are different from those most likely to use the decision aid.
What is the evidence to support including or excluding this criterion? Of 19 patient decision aids in the
Cochrane Review, 13 studies provided references to the scientific evidence and 5 studies described thequality of the evidence.
How important is this criterion in judging the quality of a decision aid?
(circle your response)

1. The patient decision aid provides references to scientificevidence used.
2. The patient decision aid reports the steps used to select thescientific evidence used (e.g. finding, appraising,summarizing).
3. The patient decision aid reports the date when it was last
updated.
4. The patient decision aid reports how often the information in
the decision aid is updated.
5. The patient decision aid describes the quality of the scientificevidence (e.g. quality of research studies).
6. The patient decision aid uses evidence taken from studies onpatients that are similar to the patients who would use thedecision aid (e.g. age, gender).
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XII. Establishing the effectiveness
What is this criterion? To identify the things that you would need to observe in order to say that afterusing a patient decision aid, the way the decision was made was good, and that the choice that was madewas good. The health care decision you need to keep in mind is one which has no clear answers foreveryone. There is more than one medically reasonable option. Each option has different features(procedures, benefits, harms, side effects). Not everyone agrees on the features that matter most to them.
Why is this criterion important? Most people agree that decision aids should help patients and theirpractitioners improve decision making. It is important to know what to look for in order to conclude thata decision aid does more good than harm.
What is the evidence on definitions of good decision making and decisions? People are still discussing adefinition of a ‘good’ decision. The most common agreement between researchers is that decisions
should be based on adequate information and personal values. A national survey found that the publicthought it was important to be informed, have clear values, make choices that matched with their values,
and be satisfied with the decision. A survey of cancer doctors stressed the importance of patients being
clear about values and being informed. In the Cochrane review of 34 studies, 18 measured knowledge,
10 measured ‘feeling clear about values’, and 3 measured ‘agreement between values and choices’.
How important is this criterion in judging the quality of a decision aid?
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2. There is evidence that the patient decision aid helps patientsknow about the available options.

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3. There is evidence that the patient decision aid helps patientsknow about different features of the options.

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4. There is evidence that the patient decision aid helps patients
understand that values affect the decision.

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5. There is evidence that the patient decision aid helps patients
be clear about which features of options matter most to them.

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6. There is evidence that the patient decision aid helps patients
discuss values with their health practitioners.

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7. There is evidence that the patient decision aid helps patients
become involved in decision making in ways they prefer.
8. There is evidence that the patient decision aid improves thematch between the features that matter most to the informed
patient and the option that is chosen.
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Glossary
Absolute risk reduction. This type of measurement tells us if a treatment is likely to help patients whotake it, compared to patients who don’t take it. In other words, it is the difference in event rates
between patients exposed (intervention group) and not exposed (control group) to a specified
intervention. For example, improvement of 1% from 4% to 3%. (Users Guides to the Medical
Literature 2002).
Applicability of evidence. Whether the patients and practitioners involved in the study, the screening or
treatment that was tested; and the outcomes measured, are similar to the patients who would beusing the patient decision aid and their situation.
Authors. The people with primary responsibility for the patient decision aid’s contents are listed alongwith their specialty and their place of work.. For example: Clinical Advisor: Natasha Fatale,
M.D., Chief of Urology, Pottsylvania Medical Center
Balanced presentation of options and their features. The use of the same level of detail and degree ofprominence when displaying information in favour of and against the options/consequences(FDA Fair Balance Prescription Drug Advertising Act of 2001). Whether the information isbalanced depends on 3 factors: format, sequencing, and framing.
Benefits. Intended positive features or consequences of an option. Benefits can be temporary or
permanent. Patients may also get a benefit from having no treatment. Benefits should describe
how strong the positive effect will be, how long it might last, and how often someone can expect
to enjoy the positive outcome.
Coaching in communication. To provide balanced instruction, suggestions, feedback, and support (forexample, through role-playing) to patients who are going to be meeting with their practitioner toprepare them to openly ask questions and make their preferences known. Coaching can beprovided in-person or over the phone, in a one-to-one session, or in a group situation with aleader.
Coaching in deliberation. To provide balanced instruction, suggestions, feedback, and support topatients who are deliberating on a health decision. Coaching can be provided in-person or overthe phone, in a one-to-one session, or in a group situation with a leader.
Coaching methods. Personal attention from a trained professional to help patients improve the quality ofdecision making. Examples include a nurse, who might tailor information to a patient’s specificsituation, provide an exercise to help patients clarify their values, help patients prepare a list ofquestions for their doctor, and helps patients think through and compare options. It could also be
provided by a trained person who helps a group of newly diagnosed patients to sort through theprocess of making the decision.
Cochrane Review. Conducted as part of the Cochrane Collaboration, a Cochrane review is a systematic
review of research studies to learn about the effect of health interventions such as patientdecision aids. Systematic reviews are defined as a rigorous process, specified at the beginning of
the study, to: a) conduct a comprehensive search of the literature for all relevant studies on a
specific topic; b) appraise the quality of the identified studies; and c) synthesize the findings intoa single report. The Cochrane Collaboration is an international not-for-profit organisation that
produces and circulates systematic reviews of healthcare interventions and promotes the searchfor evidence to aid in making healthcare decisions (http://www.cochrane.org).

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Cochrane Review of Patient Decision Aids. A systematic review of randomized controlled trials
evaluating the effect of patient decision aids for patients facing actual screening or treatment
decisions.
Communication about decision making. A discussion of facts, possible outcomes and attitudes, anddifferent ways to make tradeoffs between choices.
Conditional probability. A measure of how likely something is to happen, based on existing
information. For example, a measure of how likely someone is to suffer from a heart attack, ifthat person is a smoker. The likelihood would be different if the person were not a smoker.
Conflict of interest. “A set of conditions in which professional judgment concerning a primary interest(such as patient’s welfare or the validity of research) tends to be unduly influenced by secondaryinterest (such as financial gain)”. (Thompson DF. Understanding financial conflicts of interest. New
Engl J Med 1993; 329:573-576)

Consistency of evidence. Whether there is agreement among many studies on the effect of the same
treatment option.
Decision quality. The extent to which patients choose and receive health care options that match theirinformed and considered values.
Decision Support. Helping another person make a decision. It may be provided before a visit to apersonal practitioner (in preparation for decision making) or during the visit with the personal
practitioner (while making the decision).
Deliberation. The process of thoughtfully considering and discussing all sides of a decision thatinvolves choosing among alternative actions.
Development process. The steps taken by the creators of the patient decision aid to understand the needs ofpotential users (e.g. patients and health care practitioners), and to consult experts and users todesign, revise, and guide the development of the patient decision aids.
Disclosure of conflicts of interest. Providing information on factors that have the potential to unduly
influence the content of patient decision aids such as the source of funding (for theirdevelopment and production; people primarily responsible for the content) and affiliations ofpatient decision aid developers.
Event rate. The number of events (events might be benefits, harms, or side effects) that occur in adefined group of people (population) over a defined period of time. For example: if 1000 patientsare treated our best guess is 2 patients may die. If 1000 patients are not treated our best guess is 4
patients may die. (Users Guides to the Medical Literature 2002).
Evidence. Knowledge gained through scientific research.
Field testing. Formal testing in “real life” settings where the patient decision aid is intended to be used,with patients and practitioners who are actually involved in making a decision. Results of fieldtesting are used to improve the patient decision aid and make it more useful.
Financial interests. The potential financial interests of any company related to the patient decision aid’s
clinical content are clearly explained in plain language. For example: The Badenov
Pharmaceutical Company, Inc., a for-profit company, makes and sells Borisol, one of thetreatment choices described in this program. The Richards Foundation is a charitable, not-forprofit group completely funded by the Badenov Pharmaceutical Company, Inc.
Framing. The way health statistics and information is presented with:

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Similar use of positive and negative words to describe the intensity of the benefits or harms
without being too sensational or alarmist;
Similar display of numbers of the chances of experiencing benefits and harms;
Similar level of detail for both benefits and harms; andBalanced examples of patients’ experiences so that equal space is given to different viewpoints
and choices.
Framing can make patients feel differently about the options. For example, it can make patients feeldifferently to be told the ‘death rate’ of a procedure rather than the ‘survival rate’. It is alarming
to hear that 20% of patients might die from a surgery but reassuring to remember that 80%
survive. Hence, framing is the expression of the same information in different ways
Format. This refers to how the information about benefits and harms looks or sounds:
For written resources, the size of the type, the spacing, and the page layout of information shouldbe the same throughout the patient decision aid.
For audio or video resources, consistent volume and length of airtime is important for all options.
Funding sources. The agencies or organisations that provide the money to pay for the patient decisionaid. It must be is clearly and prominently acknowledged. For example: This program was fundedby grants from the Government of Pottsylvania, the Richards Foundation, and the Badenov
Pharmaceutical Company, Inc. It is important that the information about sources of funding ispresented in a way that ensures that it will be seen and understood by the user. Ideally, thisinformation should appear in clear large print at the beginning of the patient decision aid.
Guidance in communication. To outline possible questions and concerns, discuss barriers tocommunicating with practitioners (such as shyness, defensiveness and confusion,) and thenprovide a systematic approach to helping overcome these barriers to make sure the patients’questions and concerns are raised and addressed. Guidance can be provided in a variety of ways
including by printed materials, an internet site, audio or video tapes.
Guidance in deliberation. To outline possible actions, and then provide a systematic approach tocomparing and contrasting those actions. Guidance can be provided in a variety of ways
including printed materials, an internet site, audio or video tapes.
Guidance methods. Instruction or direction in the steps of decision making. Some examples may
include a list of the steps for making a high quality decision, filling in a worksheet that helps
patients to clarify their values about treatment options, or a list of questions to ask the doctor ordecision coach.
Harms and side effects. Unintended negative features or consequences of an option. These can be
temporary or permanent and major or minor. Descriptions of harms and side effects should
include how severe the negative effect will be, how long it might last, and how often someone
can expect to experience the negative effect. An example of harm is the development of breast
cancer from taking estrogen and progesterone. An example of a side effect is upset stomach fromtaking an antibiotic pill.
Health care consumer. A person who faces a health-related issue (for example, a decision to be tested
for a disease) or who has been diagnosed with a disease or condition.
Health literacy. An individual’s ability to perform basic reading, listening, computing and observing toobtain, understand, and use health information.
Indirect commercial funding. Any company that pays money to practitioners who have primary
responsibility for the patient decision aid’s information should be clearly acknowledged. For

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example: Dr. Fatale receives salary support from the Richards Foundation and research funding
from the Badenov Pharmaceutical Company, Inc.
Informed consent. A conscious action taken by a person to give permission for something to occur
which involves their person or privacy. For example, giving permission for a doctor to perform a
medical test or for personal information to be published.
Interactivity on the Internet. A website is interactive if there is the ability to enter information andreceive feedback based on the information that was entered. The ability for patients to enter andreceive information from each other is also a way for a website to be interactive. When a website
provides an interactive service, such as tailoring information to the patient based on informationthat the person provides, it should also explain the reasoning behind the feedback it provides.
Internal search capability. A function to locate content within a patient decision aid. The search engine
should be capable of searching for natural language words or phrases and retrieving only relevantmaterials. It should also have a way for a person to enter words that is easy to understand anduse.
Internet. A network connecting millions of computers around the world for communications purposes.
Internet Design. Describes the accessibility, organization, and internal search capacity as well as
graphical and multimedia design. For example: Is the site available each time patients want to
use it? Is the information on it organized and easy to manoeuvre? Has attention been paid topresenting the information as error-free (e.g., spelling, punctuation) as possible? Is there areadily identifiable link back to the institutional or organizational home page?
Links on the Internet. Connections to other internal pages or to external websites that form the web-likestructure of information.
Link Architecture. The way a patient decision aid organises its links and is important for patients to findtheir way around a website. The links should be apparent, organized and logical to the reader. If
the patient decision aid uses small pictures instead of words to indicate a link, they should bemeaningful and consistent throughout the website.
Link Content. Links should be accurate, current, credible, and relevant. It helps to be alerted whenleaving the patient decision aid website and going to one that is separate from the patientdecision aid.
Logical organization (navigability). Simple, consistent, and easy to use with references to other sections
provided to help a person understand the overall structure of the decision aid on the website.
More logically organized patient decision aids are designed to ensure that a person does not skip
but views all relevant information that is necessary for informed decision making.
Measurable improvements in the quality of decision-making. The most convincing evidence that apatient decision aid would really improve decision quality is likely to be generated by controlled
study designs that compare two groups of patients who both face the decision: one group thatexperiences use of the patient decision aid in practice and another group that experiences usual
practice (without a patient decision aid). An improvement in the quality of decision making withthe patient decision aid would be shown if the group who used the patient decision aid in practice
had a greater match between their values individual values and the health care options they
selected.
Medical tests (screening and diagnostic). Tests performed on healthy people to see if they have a
disease (diagnostic) or to see if they are likely to have a disease or condition (screening).

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Medical treatments. Effective treatments that medical professionals judge to be ethical and which areavailable to patients in their community.
Natural frequency. This term means the same as “Event rate”. (Gigerenzer 2003).
Needs. Gaps between what is known and what is needed to make a decision. A patient decision aid needs
assessment can tell us what information patients need to make decisions that match the personal
importance they feel toward the positive and negative features of their options. For example,
before coming to a decision about treatment, patients first need to know basic information about
their condition. They also need to know about possible treatment options (including doing
nothing) and the potential benefits and harms involved.
Number needed to treat (screen). Not all medical tests or treatments work for every patient. This is a
way of telling how many patients would need to have the treatment or test to prevent one personfrom suffering from a disease or a harmful treatment side effect. Difference in occurrence rates
of adverse outcomes between patients exposed to a treatment (intervention group) and not
exposed (control group). It is the inverse of absolute risk reduction (Users Guides to the Medical
Literature 2002).
Over-detection (or over-diagnosis): Detection by screening tests of disease which, without screening,would not have been diagnosed or caused symptoms within the person’s lifetime. A common
example is detection of low grade prostate cancer by PSA testing which would not have harmed
the person in their lifetime. Also described as detection of pseudo-disease
Patient. A health care consumer who faces a health-related issue (e.g. a screening decision) or who has
been diagnosed with a disease (e.g. diagnostic test or treatment decisions). Other names include
public, people, person, health consumer, or patient decision aid users.
Patient Decision Aid. Resources created to help patients make specific health decision when there ismore than one option (including the status quo). They providing (at the minimum) informationon the options and the features of these options (benefits, harms, pros, cons, side effects,
inconveniences) (O’Connor et al., BMJ, 1999)
Patient stories. Accounts from patients with a health condition describing their experiences with thecondition, options, decision-making, and consequences or outcomes. These may be collected asaudio or video recorded interviews or as written stories. The characteristics of stories in patientdecision aids usually vary depending on whether they involve a health issue faced by otherwise
healthy people or a treatment decision for a life-threatening illness. Many examples of “others’
experiences” are a combination of details of several real cases (O’Connor, Drake et al, 1999;
O’Connor & Jacobsen, 2003).
Plain language. The use of ways to clearly communicate health information that create optimalunderstanding.
Practitioner. A health care professional that provides direct care to patients or public. This includes
physicians, nurses, physiotherapists, pharmacists, and social workers.
Probability. The chance that something will occur. Probabilities are typically estimated by observing
what happens to large groups of patients. For example, watching 10,000 men aged 60 years for
10 years to see how many die. The probability of dying in this group over 10 years might be
1,500 out of 10,000. If a patient is similar to the patients in the group, it would say the best guessat a patient’s chance of dying over the next 10 years is 1,500 out of 10,000.
Quality of the Evidence. How accurate the descriptions and the estimated effects of different options
are. This evidence often comes from one or more studies or resources. The quality of evidence

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depends on several factors, including the strength of the study design, the quality of the methods,
whether there is agreement among studies of the same health option, and how directly the studies
address the health option.
Readability. A measure of the reading ease or difficulty of printed materials. It is usually measured
using proven formulas that gauge the length of words in syllables and length of sentences (e.g.
SMOG, Fry).
Reference class. This is the group of patients who might have a side effect or suffer from a disease in aset period of time. It is the denominator of an event rate, which is the group of patients who, overa specified period of time, are at risk of an event (Gigerenzer 2003).
Relative risk reduction. Relative risk measures how much the likelihood of something happening is
reduced in a group of patients who take a treatment, compared to a group of patients who don’t.
For example, if 60% of a non-treated group of patients died and only 30% of the treated groupdied, the treatment would have a relative risk reduction of 0.5 or 50%. Therefore, the death ratein the treated group is half of that in the control group. The relative risk reduction is the ratio of
the event rate in patients exposed (intervention group) to the event rate in patients not exposed(control group) to a specified intervention (Users Guides to the Medical Literature 2002).
Rigorous social process. A method used to gather information from many sources on the key factors
influencing the decision. For example, it may include interviews, focus groups, surveys, ordecision analysis with individuals who have faced or are facing the decision (e.g. patients,
family) and health practitioners (e.g. doctors, nurses, social workers).
Risk. In this context, risk can mean the same as probability – that is, the chance that something will
occur. For example, risk can be the chance that a positive or negative feature of an option will
occur.
Sequence. The order in which the information on options and consequences (benefits and harms) is
provided. It should be the same for all the options.
Severity. A description of how intense the harm or side effect might be. It’s best if described in apractical way that means something to patients’ daily life. For example, if a side effect was“fatigue”, it would be helpful to know how severe the fatigue might be in practical terms such as“fatigued so that you can’t walk a block” or “fatigued so that you can’t get out of bed”.
Study design. The basic method or approach used in a research project. Some common designs may be asystematic review of several studies (with or without combining the results across studies; metaanalysis), a randomized controlled trial, an observational study (for example a cohort or casecontrol study), or a descriptive study (for example, a case series).
Study quality. Details of the study source’s, design, and execution that ensure the study findings are fairand unbiased. For example, the quality of a randomized trial depends on making sure that thesame number and type of patients received the treatment, that the health professionals were notaware of which groups of patients were receiving the treatment, and that the patients were
followed for long enough to tell find the longer-term effects of the treatment.
Suitability. The ability of health information resources to match the language, logic, and experience ofthe target audience. Suitability, as used by Doak, Doak, and Root (1996), measures how wellhealth resource content, approach, and design match the culture, experiences, abilities, values
and beliefs of the intended audience. With the development of multi-media documents,
suitability should also include assessing usability-audiovisual factors and technologicalaccessibility (e.g. ease of navigation).

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Usability. A measure of the quality of a person's experience when interacting with a web-site, andgenerally tells how easy a patient decision aid is easy to use. Usability is a combination of factorsthat affect a person's experience, including: how efficient it is, whether it is easy to remember
how to use it the next time, whether there are many errors and if they are serious or not(http://usability.gov/basics/index.html). An option to remember what has been viewed isimportant, in case the entire patient decision aid cannot be viewed in one sitting. A person may
want to return at a later time without having to start from the beginning.
Users. Patients who face the decision and health practitioners who help patients learn about their options tomake the decision.
Values. How a person feels about or rates the importance of options and their positive and negative features.
These preferences are based on how their health might be affected by the decision, their attitudes
about the chances each option holds for bringing benefits or harms, their willingness to make tradeoffs over time, how they feel about certain medical procedures or anything else that might be useful inmaking the decision.
Values clarification. Ways to help patients form and share how important various options and theirfeatures are. Examples include: a) describing features of options so patients can imagine andvalue what it is like to undergo procedures and live with the consequences; b) providing
examples of how other patients’ values led them to make different choices; c) bringing forthvalues by guiding patients to rate or trade-off different features of options; and d) recording,
guiding, or coaching patients to help them share their values with others involved in the decision.