Involve patients at an early stage

Involve patient organisations and more than one patient

Ensure patients are able to really influence the work

Ask patient opinions once decisions are already made

Assume that individual patients are representative of a wider patient population

Exclude patients from key meetings/decisions

Make sure patients know what is expected from them

Be clear about time commitment required and project duration

Provide formal training if needed

Consider in advance what to do if patients become ill

Discuss with patients beforehand if the project is likely to touch on sensitive or potentially upsetting issues such as mortality rates, serious complications or the effectiveness/ineffectiveness of treatments

Give patients insufficient notice of meetings or deadlines for feedback

Expect patients to have any special knowledge or skills; training should be provided if these are required

Allow the day of the meeting to be the first occasion the chairs meet or speak with the patients

Discuss patients’ confidential medical information either pre-meeting or during meetings

Consider meeting venues that are accessible to patients

Organise meeting venues that are easy to get to (e.g. parking, disabled access). Consider mid-morning or afternoon meetings to allow for travelling time

Offer a pre-meeting telephone call or discussion to prepare patients

Introduce everyone, ensure patients are involved

Avoid jargon and ensure the chairs confirm patient understanding regularly

Take frequent breaks

Allow discussion of potentially upsetting or distressing topics without first preparing patients

Conduct long meetings without breaks or refreshments

Use jargon, technical language or complex diagrams/slides where these can be avoided

Exclude patients from discussions or prevent them from contributing

Ensure expenses are reimbursed fully and promptly so that patients are not left “out of pocket” for long

Rely on patients to know how to access reimbursement systems

Leave patients “out of pocket” for long periods

Ensure patients are involved in publications if they have contributed and meet the criteria for authorship

Consider lay versions of important documents

Consider making articles open access so that patients can read them for free

Assume that patients do not want to be involved in publications

Fail to acknowledge patient involvement in journal articles

Leave key articles behind a paywall so that patients cannot access them

Ensure patients have a point of contact who is accessible and responsive

Ensure patients receive feedback on how their involvement is affecting the project(s)

Dismiss any problems or concerns identified by patients

Expect patients to respond to short deadlines or undertake large tasks

Assume patients know who they can talk to for advice or to express concerns