Chapter 6: Gathering uncertainties
Uncertainties will usually come from four sources:
- existing guidelines and systematic reviews.
In the definition of 'patients', PSPs may wish to include those at risk. In 'carers', PSPs usually include wider family members/stakeholders (e.g. teachers) who may have a viewpoint.
PSPs should try to gather their uncertainties from as wide a range of potential contributors as possible. They must ensure patients are as confident and empowered as clinicians to submit their uncertainties about treatments.
This is usually done using surveys hosted on or linked to the PSP website, with paper formats available for those who are not able to contribute electronically. In some cases, people may be consulted face-to-face, for example through interviews or focus groups, if a survey is not an appropriate approach. Reaching patients does not need to be costly or time-consuming. Most patient organisations can use existing communication mechanisms, including newsletters, email networks and online message boards to help communicate the survey.
The Intensive Care PSP created a video to explain the PSP and promote the survey.
The Emergency Medicine PSP launched its survey at the Royal College of Emergency’s annual conference in 2015. Their video explaining the PSP is on the JLA website.
While the JLA Adviser can offer guidance on gathering uncertainties, PSPs should use a method which is suited to their membership, resources and infrastructure.
Clinicians are requested to identify uncertainties which are immediately relevant to treating a patient with the particular health problem. They are asked to recall and share any issues which they have encountered during discussions or consultations between patients and those caring for them.
It is worth noting that this is not the same as recalling an area where research is lacking. What the JLA process is looking for is the uncertainty during a consultation where the doctor thinks "How am I going to treat this? I'm not sure. I wish I knew the answer."
A challenge for some clinicians may be admitting to clinical doubt. This is why it is important that respondents know that uncertainties which they raise will not be attributed to them as individuals, or their admission of uncertainty seen to reflect unfavourably on them.
Approaching the relevant Royal College for contact details of an individual or small group of people who can coordinate the dissemination of information is one way to gain access to a group of clinicians. Many Colleges have smaller committees or associated societies made up of clinicians with expertise in caring for people with a specific health problem. For example, for the Urinary Incontinence PSP, these included the British Society of Urogynaecology within the Royal College of Obstetricians and Gynaecologists and the British Association of Urological Surgeons within the Royal College of Surgeons.
Also, groups which support people with a particular health problem will often have good relationships with interested clinicians and can provide contact details if required. As clinicians are often asked to participate in consultation exercises, it can be helpful if Steering Group members are willing to make personal contact with their networks of clinicians, to encourage participation by endorsing the process.
How many responses is enough?
Steering Group members should be mindful of the volume of responses that they can manage. Attracting a high number of respondents may seem desirable, but this can create problems if a PSP does not have the resources to process a high number of submitted uncertainties. In addition, it should be noted that this is a qualitative survey aimed at generating questions and themes: a high number of respondents may not necessarily result in more or better uncertainties and the range of themes needed may come from smaller numbers of responses. Some Steering Groups have taken active measures to ensure they receive a manageable number of responses while still consulting with a wide range of constituent groups. These measures include:
- placing a limit on the number of uncertainties each respondent can submit (for example limiting it to three or fewer)
- agreeing the maximum number of responses that can be processed and closing the survey on achieving that - it is advised that Steering Groups identify the range of constituent groups they want responses from, and that targeted communications are planned to ensure they are secured, rather than using solely mainstream routes of communication, which may generate a large but homogenous response
- agreeing in advance to stop the analysis once saturation point is reached and no new themes are emerging.
It is important for Steering Groups to be realistic about what their resources will allow. There is more information about how the Autism PSP managed potential numbers of responses in an article from the PSP on the JLA website.