Involvement | 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
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Preparation and training | 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
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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
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Finance | | |
Publication and dissemination | 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
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Communication | | 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
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