Table 2

EMBARC patients’ key recommendations for patient involvement in research

  • 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

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

  • 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

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

  • 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