Working with patients

Patients, carers and the networks which represent them are diverse. Some will be highly professionalised and accustomed to contributing to open debate. Others may be smaller and entirely dependent on volunteers and very little funding. Individual involvement may be very dependent on the nature of the patients' condition, as well as their age group.

It is important to identify the preferred methods of communication and involvement of patient and carer groups. While some will operate fully online, others may not use email. Even for those that do, the option of receiving paperwork through the post should be offered. Printing documents may not always be easy. 

Tips for inclusive communication and involvement include:

• Correspondence should be clear, concise and easy to understand.
• Always include a named person and phone number, not just an email address, when providing contact details.
• Offer to post copies of documents/attachments. Ensure these are formatted to allow space for forms to be filled out by hand if necessary.
• When providing paper copies of documents, give people the option of requesting them in large print or other accessible formats (to see the Stroke In Scotland Priority Setting Partnership's aphasia-friendly information leaflet, click here).
• If requested, take time to talk people through any online tools over the phone which they may be using for the first time.
• Partnerships should always be willing to accept responses to anything (including formal consultations) in paper copy or in electronic formats or over the telephone. This will encourage response and ensure the process does not discriminate against people unable to use or unfamiliar with certain formats. 
• For meetings or workshops where places are allocated on a first-come-first-served basis, keep separate reservation lists for people responding online and by post.
• A travel bursary may be built into the project at the planning stages, where Partners have the resources to provide this, and be available to individuals without the resources to attend. For example, patient organisations without financial resources may deselect themselves from participating if they have financial limitations. Guidance from INVOLVE on payment for patient and public involvement, including travel, is here.
  

Facilitators and chairs should ensure patients and carers have equal voices to those of clinicians in meetings and workshops. However, it is also important to recognise that the views of patients and carers may vary. Neither group should feel that their voice is more or less valid than the other’s. The environment of any Priority Setting Partnership meeting should be respectful. Taking extra time to support patients before, during and after meetings will ensure people are able to contribute equally and comfortably present their views, particularly because they may be talking about very personal issues.   

Examples of support include:

• early provision of information
• opportunities to meet the chair and talk through the format of meetings beforehand
• evaluation forms on which patients and carers can comment on their experience, anonymously if preferred

Many patient organisations will have a great deal of expertise and good practice experience of involving patients and carers. This should be shared across the Partnership.

Further reading:
Good practice in active public involvement in research, INVOLVE, 2009
Patient and Public Involvement in UK Clinical Research Collaboration Advisory Groups, UKCRC
What you need to know about payment, INVOLVE, 2011