International Patient Decision Aid Standards (IPDAS)
Collaboration

IPDAS 2005: Criteria for Judging the Quality of Patient Decision Aids
Steering Committee: A O’Connor (CA) & G Elwyn (UK) (co-leaders) with A Barratt (AU), M Barry (US), A Coulter (UK),M Holmes-Rovner (US), N Moumjid (FR), H Llewellyn-Thomas (US), M O’Kane (US), R Thomson (UK), D Stacey (CA),T Whelan (CA) Methods Group: G Elwyn (leader, UK) with S Bernstein (US), P Shekelle (US), R Thomson (UK), R Volk (US)
Stakeholder Leader: A Coulter (UK) Quality Criteria Panels: A O’Connor (CA) & H Llewellyn-Thomas (US) (editors) withJ 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)

What are patient decision aids and why are they needed?
Patient decision aids are tools to help people participate in their health decisions in ways they prefer. They areused when there is more than one medically reasonable option to diagnose or treat a health problem. Each of
the options has good and bad features that people value differently. Even when two people are in the same
situation, what is important for one person may be different for another person. Therefore, there is no clear
answer that applies to everyone. The best choice involves matching which features matter most to a person withthe option that has these features. To make a good decision, you need an expert on the facts (e.g. a healthpractitioner) and an expert on which features matter most (e.g. the patient) and a way to share their views witheach other in ways they prefer.
Patient decision aids aim to do three things to prepare a person for decision making. They provide facts about aperson’s condition, the options and their features. They help people to clarify their values (the features thatmatter most to them). They help people to share their values with their health care practitioner and others, so acourse of action can be planned that matches their values. Patient decision aids do not advise people to choose
one option over another. They do not replace counseling from a health care practitioner. Instead, they prepare
people to discuss the options with their health care practitioner.
An international group of researchers, known as the ‘Cochrane Review Team of Patient Decision Aids’ iscompiling decision aids and summarizing the results of research trials. The latest review of 34 studies shows thatpatients 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 withfeatures they most value (O’Connor et al., Cochrane Library, 2003).
The International Patient Decision Aid Standards (IPDAS) Collaboration is a group of researchers,practitioners and stakeholders from around the world. The goal is to establish an internationally approved set ofcriteria to determine the quality of patient decision aids. These criteria will be helpful to a wide variety ofindividuals and organizations that use and/or develop patient decision aids.
Why are standards needed?
There are over 500 patient decision aids available or being developed by many different individuals and groups
around the world. However, people have difficulty knowing whether or not a decision aid is a source of reliable
health information that can help in decision making.
How were the standards obtained?
There was a 2-stage evidence-informed Delphi consensus process•
Participants included 122 people from 14 countries and 4 stakeholder groups [researchers/developers;
health professionals/ patient/consumers; policy makers/health plan administrators]•A voting document was developed from a series of background papers on 12 quality domains. [The experts
who wrote these papers are listed above]. Before voting on the importance of each criterion in judging thequality of a patient decision aid, voters reviewed: definition of decision aids; definition of criterion;
theoretical link between criterion and decision quality; and empirical evidence supporting or not supporting
its use in decision aids. Evidence was derived from fundamental studies and a Cochrane Collaboration
systematic review of randomized trials of patient decision aids.
The standards are summarized in a users’ checklist on the next page.
For more information and to obtain copies of the IPDAS documents visit our website atwww.ipdas.ohri.ca

Table 3. IPDAS Patient Decision Aid Checklist for Users
I. Content: Does the patient decision aid …
Provide information about options in sufficient detail for decision making?
□ describe the health condition 2.1
Additional items for tests□ describe what test is designed to measure 2.9□ list the options 2.2□ list the option of doing nothing 2.3□ include chances of true positive, true negative, falsepositive, false negative test results 2.10
□ describe the natural course without options 2.4□ describe procedures 2.5□ describe possible next steps based on test result 2.11
□ describe positive features [benefits] 2.6□ include chances the disease is found with / without
screening 2.12
□ describe negative features of options[harms / side effects / disadvantages] 2.7□ describe detection / treatment that would never havecaused problems if one was not screened 2.13
□ include chances of positive / negative outcomes 2.8
Present probabilities of outcomes in an unbiased and understandable way?
□ use event rates specifying the population and time
□ allows the patient to select a way of viewing
period 3.1
probabilities [words, numbers, diagrams] 3.8□ compare outcome probabilities using the same
□ allow patient to view probabilities based on their own
denominator, time period, scale 3.2, 3.3, 3.6
situation [e.g. age] 3.9□ describe uncertainty around probabilities 3.4□ place probabilities in context of other events 3.10
□ use visual diagrams 3.5□ use both positive and negative frames [e.g. showing
both survival and death rates] 3.13
□ use multiple methods to view probabilities [words,numbers, diagrams] 3.7
Include methods for clarifying and expressing patients’ values?
□ describe the procedures and outcomes to help
□ ask patients to consider which positive and negative
patients imagine what it is like to experience theirfeatures matter most 4.2
physical, emotional, social effects 4.1□ suggest ways for patients to share what mattersmost with others 4.3
Include structured guidance in deliberation and communication?
□ provide steps to make a decision 6.1□ include tools [worksheet, question list] to discuss
options with others 6.3□ suggest ways to talk about the decision with a healthprofessional 6.2

II. Development Process: Does the patient decision aid …
Present information in a balanced manner?
□ able to compare positive / negative features of
options 9.1
Have a systematic development process?
□ includes developers’ credentials / qualifications 1.1□ finds out what users [patients, practitioners] need todiscuss options 1.2, 1.3□ has peer review by patient / professional experts not
involved in development and field testing 1.8a, 1.8b
□ is field tested with users [patients facing thedecision; practitioners presenting options] 1.4, 1.5□ shows negative / positive features with equal detail[fonts, order, display of statistics] 9.2
The field tests with users [patients, practitioners] show
the patient decision aid is:□ acceptable 1.6, 1.7□ balanced for undecided patients 9.3□ understood by those with limited reading skills 10.6

Use up to date scientific evidence that is cited in a reference section or technical document?
□ provides references to evidence used 11.1
□ describe quality of scientific evidence [including lackof evidence] 11.5a, 11.5b□ report steps to find, appraise, summarise evidence
11.2□ uses evidence from studies of patients similar to□ report date of last update 11.3
those of target audience 11.6
□ report how often patient decision aid is updated 11.4
Disclose conflicts of interest?
□ report source of funding to develop and distribute the □ report whether authors or their affiliations stand topatient decision aid 7.1, 7.2
gain or lose by choices patients make after using thepatient decision aid 7.3, 7.4
Use plain language?
□ is written at a level that can be understood by themajority of patients in the target group 10.3
□ is written at a grade 8 equivalent level or lessaccording to readability score [SMOG or FRY] 10.4

□ provides ways to help patients understandinformation other than reading [audio, video,in-person discussion] 10.5

Table 3. IPDAS Patient Decision Aid Checklist for Users
Meet additional criteria if the patient decision aid is Internet based□ provide a step-by-step way to move through the web □ provides security for personal health information
pages 8.1
entered into the decision aid 8.4□ allow patients to search for key words 8.2□ make it easy for patients to return to the decision aid
after linking to other web pages 8.5□ provide feedback on personal health information thatis entered into the patient decision aid 8.3□ permit printing as a single document 8.6
Meet additional criteria if stories are used in the patient decision aid□ use stories that represent a range of positive and□ state in an accessible document that the patient gave
negative experiences 5.2
informed consent to use their stories 5.5□ reports if there was a financial or other reason whypatients decided to share their story 7.5

III. Effectiveness: Does the patient decision aid ensure decision making is informed and values
based?

Decision processes leading to decision quality. The patient decision aid helps patients to …
□ recognise a decision needs to be made 12.1
□ be clear about option features that matter most 12.5
□ know options and their features 12.2, 12.3
□ discuss values with their practitioner 12.6
□ understand that values affect decision 12.4
□ become involved in preferred ways 12.7
Decision quality. The patient decision aid …
□ improves the match between the chosen option and the features that matter most to the informed patient 12.8

Note: numbers behind items correspond to endorsed criteria in Table 2.