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Table 2 Patients and Families (P) and representatives of professional societies’(R) perspectives on patient involvement in Choosing Wisely initiatives (n = 17)

From: Patient and family involvement in Choosing Wisely initiatives: a mixed methods study

Theme and Subtheme

Participant Group

Exemplar Quotation

Theme 1: Impact of perceived power dynamics on the discussion of low-value care in the clinical interaction

 Assumed roles of patient and care provider

P/R

We need to remove fear, and that power dynamic that exists, that automatic power dynamic that exists between clinicians and providers and physicians to make patients and families not be afraid to ask questions.” – Interview 3 (Patient)

 Individualized context of care decisions

P/R

Part of it [care decisions] is always determining what is the value of a test. So if sometimes, it’s the path of least resistance for some people and others they actually value the test even if it’s a negative test … how it is done is a difficult question to answer because I think it really depends on the scenario.”-Interview 6 (Representative of society)

 Physical presence

P

I was expected to make decisions but it was relayed through my grandma or a nurse because if I missed when he [the doctor] was there it was a lack of opportunity from a care team perspective.” – Interview 2 (Patient)

 Care providers should be trained to engage families in discussions about low-value care

P

Providers probably need to be trained in some ways of having those conversations because I have heard it’s easier to just write a prescription than it is to have a conversation … especially if it’s a patient who has waited two hours at a walk in and is wanting to walk away with a prescription for antibiotics and they are going to be pissed off by the fact that they can’t get that.” –Interview 3 (Patient)

Theme 2: How to communicate about low-value care

 Understanding the factors that contribute to decisions around low-value care

P/R

It’s really important for patients to be better educated when there is some type of test, what would the test show and what would we do with that, lots of patients think you have a test and it’s a black and white yes or no and then we have a magic pill to treat you.”-Interview 16 (Patient)

 Communication preferences and strategy different for each family

P

If I had questions I called my family physician … because I have a great rapport with my family physician I can do that. So I don’t have a problem to phone and say okay I am not clear on this, what does this mean?” – Interview 13 (Patient)

 Empowering patients and families on how to communicate

P

Maybe the doctors need to lead the way because as a patient I would like to be more involved in decision making and empowered in that regard I don’t have the expertise to decide what is unnecessary and what is not.” -Interview 16 (Patient)

 Care provider suggestions on decision making

R

Go down Dr. Google and figure things out themselves but I don’t personally see that as a bad thing because I think, you can go and do your research and get a sense of the questions you want to ask instead of kind of being just a pawn going through your care.” - Interview 9 (Representative of society)

Theme 3: Perceived barriers to patient involvement in reducing low-value care

 Brief Clinical Interactions

P/R

The short interaction time frame, often times you don’t have a lot of time to you know get the big picture … so a readers’ digest version of your rationale as to why this shouldn’t happen right now [is needed].” – Interview 2 (Patient)

 Societal Assumptions

P/R

The lack of a test, does not necessarily mean a lower standard of care, whereas that’s a bit of a misnomer in that people might think it is … those conversations need to be had so that people don’t think that lack of testing equals lack of quality in care” –Interview 5 (Representative of society)

 Family and caregivers may not be aware of potential role in decision making

P

I think I was adequately involved because I knew that I could be and I asked for that but I think my family needed to be more educated.”-Interview 2 (Patient)

 Tokenism

R

I think we need to figure out how to move beyond that [tokenism], patients have a great depth of information as it relates to their illness … And so training patients to be the voice of the mass of patients and then training providers in how to respectfully engage patients in the process to make it meaningful for everybody.”- Interview 11 (Representative of society)

 Broad nature of topics covered by clinician lists

R

“If you have a group of recommendations that you can narrow down to a focused groups of patients that would be easier because if we had said we have got this list of 22 candidate recommendations and then farmed them out to all [area of care] patients in the country I just don’t know how you would do that.” Interview 10 (Representative of society)

Theme 4: Suggested strategies to engage patients and families in Choosing Wisely initiatives

 Conversations about low-value care centered around care interaction

P/R

[In response to how should conversations occur] “Probably at a primary care or when you are receiving care from a physician before you are referred to tests.”-Interview 15 (Patient)

 Consistency in patient engagement

R

Its not one discipline who has that responsibility or who has that role, this is inter [disiciplinary], and the patient and the family and the community expect us to be working collaboratively and to be maxing out the knowledge and skill and contribution of each of those disciplines across our practices so I think we are actually needing something that patients and families and communities already expect” –Interview 10 (Representative of society)

 Multidimensional approach

R

“We have to train individual people, the public through social media, and train the policy makers, we have to train the practitioners and the nurses, it has to be a multipronged approach, there is no way there will be one single easy solution.” – Interview 11 (Representative of society)

 Educate patients and families to advance their knowledge of why a test/treatment or procedures isn’t needed

R

Patients’ involvement could be one of requesting additional education about whether a test they have learned about would be useful for them. Then there is discussion to revolve around either the importance or optionality of having that test or doing different tests instead.” -Interview 18 (Representative of society)

 Deliver input on messaging of recommendations

P/R

“When we had narrowed down the list if we had involved patients in some of the wording or perhaps in speaking to the harms that are not apparent, so [if] we tried to word that in a way that was appropriate and sensitive that would have been a very good opportunity to have engaged a patient to sort of see their perception of our perception of the harm.”- Interview 9 (Representative of society)

 Develop patient-clinician partnerships

P

“If I had questions I can call my family physician, because I have a great rapport with my family physician I can do that. I don’t have a problem to phone and say okay I am not clear on this, what does this mean?”-Interview 5 (Patient)