Chapter 5: Gathering uncertainties

Uncertainties will usually come from four sources:

  • patients/service users with experience of the health or care area or setting
  • 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 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 discussion 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.

The JLA Adviser can offer guidance on gathering uncertainties, but PSPs should draw on the knowledge and experience of their Steering Group members and use a method that is suited to their context, resources and infrastructure. While patients and carers and asked to share unanswered questions relating to their experience of a healthcare area (which could come from a problem or concern), clinicians are requested to identify uncertainties that are immediately relevant to treating a patient or delivering an intervention or service.  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.  Therefore 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 these often under-served, 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
  • those who face cultural barriers to discussing certain health issues or research
  • 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 online surveys due to lack of access or skills.

“in retrospect we probably should have planned to spend more time with some of the seldom heard groups who won’t necessarily respond to an online questionnaire.”

From PSP feedback survey to the JLA

PSPs should allow time to pilot the survey, including with seldom-heard groups. JLA Advisers rely on the PSP Steering Group to identify relevant groups and to advise on how to reach them. PSPs should however keep in mind what is reasonable, relevant and practical within their clinical area.

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

“I am conscious that people’s experience differs depending on where they live – region by region and city contrasted with rural communities.  It does concern me that research is often focused around cities and universities but to truly represent the priorities of the country we need to focus on strategies to reach out as far and wide as we can.”

From PSP Steering Group member feedback survey to the JLA