Table 1

Recommendations for clinicians, written by both physicians and patients, to ensure appropriate patient engagement

Representativeness (i.e. are patients involved in the project representative of the overall patient population?)Involve more than one patient in any project. This has multiple benefits, including increasing the representativeness, but also allowing for peer support and ensuring there is representation if patients become unwell and are unable to attend meetings or participate in activities. If patients are attending as representatives of a large patient group or organisation, ensure that discussions or outcomes are also shared with the wider group so that a larger body of patients has the opportunity to contribute.Ensure patient representatives understand that they are representing other patients and not just giving their personal story.Incorporate broader patient data into data collection, e.g. by performing a literature review for patient perspective articles or performing a patient survey with a sufficient sample size to be considered representative of wider patient opinion. Patient representatives can advise on the most relevant patient-centred search terms of literature reviews and ELF can also provide advice on this.
LanguageCurrently, there is a requirement for participating patients to speak English. This can result in a UK/Ireland bias and so it is important to try to achieve representation of other European countries. Where activities can be multilingual (such as patient surveys), these methods should be used. ELF provides support for multilingual focus groups and surveys.
Patient travel and reimbursementFace-to-face meetings are the most effective way to engage patients. The cost of this is the requirement for patients to travel to meetings, which is expensive and time consuming. It is essential that the project funds patient travel adequately and in an appropriate way and timeline. Where travel is prevented through ill health or other issues, teleconference facilities should be offered to avoid excluding patients’ valuable contributions.The INVOLVE guidelines ( from the National Institute for Health Research (UK) suggest that, wherever possible, patients involved in research projects should receive payment or a fee for participation. However, they note that consideration should be given to whether payments may affect state benefits.
Lack of scientific knowledge or backgroundPatients cannot be expected to be experts in clinical trial design, observational research or guideline methodology. In the ideal scenario, patients would be trained with the knowledge that they require, through schemes such as the European Patient Ambassador Programme (EPAP; If it is not feasible for patients to have such training, we recommend:1)Project chairs meet with patients prior to meetings so that patients can have an explanation of the context of the expected discussion;2)Use of natural breaks in discussion to explain to patients in lay terms what is being discussed and ask patients specific questions where their input is needed;3)Debriefing with patients after meetings to ensure they have understood the discussions.For rare diseases, including rare pulmonary diseases, EURORDIS (Rare Diseases Europe) provides training to empower patient representatives to participate in clinical research and other clinical projects.
Perception of “tokenism”Set specific objectives for patient involvement in projects and communicate these to all stakeholders. The professional participants in a task force or research project should understand what the role of patients in the project is, and patients should understand exactly what is expected of them.Involve patients as equals. We have had a very positive experience of including patients as full equal members of a guideline task force.
Patients isolated or ignored in meetingsThere is a responsibility on the chairs of meetings to prompt participants to involve the patient representatives, and to prompt patients to provide input where appropriate. Patient participation can be facilitated by making clear the role of patients to both the patients and physicians at the start of the project.Smaller group work, such as subcommittees or working groups, can make it easier for patients to participate as groups are smaller, but there is similarly a responsibility on subgroup participants to ensure patients are involved.
Patients lacking confidence to get involvedWelcome and introduce patients at the start of every meeting. Encourage all task force or study team members to introduce themselves; even if all of the professionals are well known to each other, they are not well known to the patients. Chairs should give an introduction explaining the role of the patients and encouraging task force or study members to involve the patients.It is particularly helpful for patients to meet with the chairs or ELF representatives prior to meetings (and particularly the first meeting) so that they know what to expect and get to know some other people in the meeting prior to joining larger group meetings.Research or guideline meetings often also involve social events and it is appropriate to involve patients in social events so that they can get to know panel members in a more relaxed setting and are not excluded.
Conflicts of interest and confidentialityJust like physicians, patients may have conflicts of interest that are relevant to their participation in task forces and research projects.Project chairs should give consideration to how they will manage patients’ conflicts of interest. This may include financial conflicts of interest (patients with business interests related to the healthcare field or having relationships with pharmaceutical companies) or non-financial conflicts of interest. The most frequent non-financial conflict of interest is that the patient may be a patient under the care of a member of the task force. This is not necessarily a problem, but consideration should be given to whether patients may feel coerced to participate, and whether they may feel able to give their honest opinion, which may be at odds with the opinion of their physician.Patient confidentiality should be maintained at all times. Patients may choose to share information about their medical background, but their physician should not disclose information to the panel or panel members without patient consent.
Lack of awareness of governance and regulatory aspects around patient involvementClinicians may be concerned about involving patients in research in the belief that all work with patients requires ethical or other governance approvals. Note that ethical approval is not required to involve members of the public in designing or conducting research studies, participating as a member of an advisory group or helping to develop study materials or questionnaires.
Identifying suitable patientsConsider the knowledge and experiences you need to inform the project. Try to create a “job description” or specification of the kind of patient you wish to involve.Involve patient organisations wherever possible as they provide peer support, training and, in some cases, resources to aid patients. Involving patient organisations also generally means the representatives can be the collective voice of a group rather than simply representing themselves.Consider the commitment required by patients. It is important to remember that patients have jobs, lives and commitments of their own and may not be able to attend all meetings or respond to short deadlines. Give information about the time commitment and project duration up front to let patients make an informed decision about whether to participate.