Table 3 Themes, subthemes and illustrative quotes from tweet text

muTUal respect

Mutual respect

82

Subtheme: Respect

4

Tweets in this subtheme present the action of mutual respect between researchers and patient partners, regardless of title or status

Subtheme: Disrespect

78

Tweets in this subtheme highlighted examples of PE practices that made patient partners feel looked down upon, or facilitated differential treatment due to patient partner status. Tweets differentiate from ‘Exclusion’ subtheme, since actions we not exclusionary, however, posters felt undervalued

I have been told that patients do not know enough and should stay out of it

Support

Community

117

Subtheme: Promotion

88

Inviting twitter followers to join the discussion on #HNTDPE and using interest in the hashtag to promote interest in patient engagement

In Ontario, there is an active twitter discussion on #hownottodopatientengagement. It’s worth checking out. #ICIC18 @TheChangeFdn

Subtheme: Support

29

This subtheme seeks out advice from practitioners and patient partners, acknowledging patient partner leadership and sharing what they have learned from people with lived experience as patient partners. This subtheme highlighted the importance of peers and community building as a means of supporting PP

We hope that you can make it — we can learn so much from you about #HowToDoPatientEngagement!!

Inclusivness

Inclusivity

31

Subtheme: Exclusion

23

The tweets in the subtheme consisted of codes relating to compensation and accessibility, were mainly negative, and regularly commented on the shortcomings of the current compensation of patient partners or barriers to partnership. Many users commented on specific experiences in order to justify a lack of appropriate payment in return for their expertise

When a SPOR-funded entity doesn’t have a patient partner compensation policy… aka they aren’t compensating patient partners… I’ve started declining requests that don’t acknowledge our time & expertise

Subtheme: Inclusion

8

The inclusion subtheme shared resources developed by patient partners on the importance of compensation

Co-build

Co-build

3

Subtheme: PE practices

3

This subtheme emphasizes positive PE practices through the dissemination of PE resources for existing standards in patient oriented research

On March 20 the @OfficialNIHR, in conjunction with a host of U.K. associates, released a set of standards and indicators for public involvement in research, found here: https://t.co/OK34P6MYUN Another excellent resource for anyone interested in #HowToDoPatientEngagement https://t.co/ngYor2bqWI

N/A

Impact

43

Subtheme: Impact as a value (see also Fig. 4)

27

PP’s feelings of both the value of their contribution and feeling of fulfilment or lack thereof. Many of these tweets contained calls to action by PPs to recognize the current tokenistic treatment of patient partners that made them feel unvalued or used only to advantage the research team

I see we are in the ‘academics use patients’ words for their own glory’ stage of patient engagement

Building on the experience of patients and families to improve care for everyone. Inspiring. #patientexperience #patientsafety #patientleadership #howtodopatientengagement So pleased for this mom that she had this opportunity and was supported to speak up

Subtheme: Impact as an outcome

16

This subtheme emphasizes PE outcomes that leave a positive impact on the patient partner and the project

What would your response be if your name was attached to a report that you were not consulted on. Your name was only added to say that a Patient voice is there, in name only

What matters to me—not being turned into an infographic. What’s the purpose of this, and who’s the audience?