Chapter 5: Gathering uncertainties

Uncertainties will usually come from four sources:

  • patients/service users with experience of the health area
  • carers
  • clinicians
  • existing guidelines and systematic reviews.

In the definition of ‘patients’, Priority Setting Partnerships (PSPs) may wish to include those at risk of the condition. In ‘carers’, PSPs usually include wider family members or other stakeholders 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 evidence uncertainties.

Uncertainties are typically gathered via an online survey 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, as well as via a survey. Reaching patients does not need to be costly or time-consuming. Most patient organisations can use existing communication mechanisms, including newsletters, meetings, email networks and online message boards to help communicate the survey.

news item on the JLA website from the Digital Technology for Mental Health PSP explains the methods they used to collect responses, in addition to the online survey. 

The Type 2 Diabetes PSP created a video to explain the PSP and promote the survey

Another example is from the Intensive Care PSP https://vimeo.com/72648172.

The Emergency Medicine PSP launched its survey at the Royal College of Emergency’s annual conference in 2015. 

The Chief Social Worker for Adults in England recorded videos about why it was important that people contributed to the survey for the Adult Social Work PSP.   This PSP also made an easy read version of the survey and you can see an example on the website.

While the JLA Adviser can offer guidance on gathering uncertainties, PSPs should use a method that is suited to their membership, resources and infrastructure.

Clinicians are requested to identify uncertainties that are immediately relevant to treating a patient or delivering an intervention. They are asked to recall and share any issues or questions that 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 that 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 specific expertise. 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.

Groups that 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.

At the planning stages, PSPs should consider how to reach out to relevant but seldom-heard groups. It is important to be clear about this at the budget planning stage as reaching out to different groups, particularly marginalised or vulnerable groups, may have cost implications.

Each PSP is different, but examples of groups that may be particularly important in certain health areas could be:

  • those whose first language is not English
  • children and young people (thinking about the rules to consider when involving them in surveys, Steering Groups and workshops, and the different social media that they might use to communicate)
  • anyone who might be excluded from completing an online survey due to lack of access or skills.

PSPs should allow time to pilot the survey generally, but particularly with seldom-heard groups. JLA Advisers rely on the PSP Steering Group to identify relevant groups and how to reach them and to help build up a picture of which audiences the PSP aspires to reach. PSPs should however keep in mind what is reasonable and practical – for some PSPs it may be less important to reach out to particular groups, for others, much more important.

There is more information about how the Type 2 Diabetes PSP engaged and involved people from Black, Asian and Minority Ethnic groups in an article from the PSP in the news section of the JLA website. 

There are relevant resources on the INVOLVE website, including

http://www.invo.org.uk/posttypepublication/diversity-and-inclusion-what%E2%80%99s-it-about-and-why-is-it-important-for-public-involvement-in-research/

http://www.invo.org.uk/posttypepublication/strategies-for-diversity-and-inclusion-in-public-involvement/

http://www.invo.org.uk/wp-content/uploads/2014/11/9982-Social-Media-Guide-WEB.pdf