Gathering treatment uncertainties

Uncertainties will come from four sources:

patients
carers
clinicians
existing literature

Organisations and individuals participating in a Priority Setting Partnership should approach their members and the people they represent to ask them to submit their uncertainties. This is usually done using surveys, in electronic and paper formats. Alternatively, people can be consulted face-to-face.

An example of a JLA uncertainties information form and survey, which can be adapted to suit the needs of individual Priority Setting Partnerships, can be downloaded here.

While the JLA can offer guidance on gathering uncertainties, Partners are free to choose a method which best suits their membership, resources and infrastructure.

Priority Setting Partnerships should endeavour 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 questions about treatments.

In practice, this means ensuring that:

information and forms are clearly written
participation can take place over email, internet or by post
responses are confidential

Steering Groups may consider including collecting demographic information and information on clinical setting within the survey. This will help them to identify whether or not particular respondent groups are under-represented, and to target their publicity accordingly to encourage their participation. The Type 1 Diabetes Priority Setting Partnership’s survey asked for a range of demographic data. To download a copy of the survey click here.

It is helpful to set a time-scale that ensures maximum response while still retaining the momentum of the project. A deadline of between two and three months has been recommended, as this is when most Steering Groups have agreed that saturation point has been reached.

Examples of JLA Priority Setting Partnerships' methods and materials for gathering uncertainties can be viewed here

The Urinary Incontinence Priority Setting Partnership (originally referred to as a Working Partnership) developed a questionnaire which could be completed electronically and emailed back, or printed out and posted. Incontact (now the Bladder & Bowel Foundation) distributed the questionnaire by posting information on its website, then adding a link to this from various online message boards and fora, on other urinary incontinence charities’ websites, and by providing the link and information in various continence magazines and newsletters. The questionnaire was also posted to the Foundation's 1000 members. To download the questionnaire, click here.

The Vitiligo Priority Setting Partnership developed an online survey which included information about the exercise, written in plain English, and a form for people to submit their uncertainties. This was also available in paper copy. It was promoted to the Vitiligo Society’s members, in the national ethnic minority press and in local newspapers for areas with large ethnic minority populations. The paper survey and background information can be downloaded here.

The Prostate Cancer Priority Setting Partnership developed a questionnaire which incorporated examples and information. This was hosted on the website of the Prostate Cancer Research Foundation and promoted to partner organisations via email and post. Click here to download the survey.

The Type 1 Diabetes Priority Setting Partnership developed an online survey using Survey Monkey software (www.surveymonkey.com), which was hosted on the UK Diabetes Research Network's website. A promotional flyer was produced and this was promoted by the steering group members throughout the diabetes communities, on email, in newsletters and at conferences. A printable version of the survey can be downloaded here. The accompanying background information sheet is here.

The Ear Nose & Throat - Aspects of Balance Priority Setting Partnership was led by ENT UK and the British Society for Academic Otolaryngology. Their aim was to identify questions that are most important to people who suffer from balance disorders, their carers and clinicians. An invitation to participate in the exercise can be downloaded here. The paper version of the survey, which was also available online, is here.

The Cleft Lip and Palate Priority Setting Partnership set up an online survey on Survey Monkey. The link, plus accompanying information, was hosted on the Cleft Lip and Palate Association's website. Click here to see a screenshot, and click here to download a PDF of the survey form.

The Eczema Priority Setting Partnership decided to take a slightly different approach. Their survey asked patients, carers and clinicians to identify five uncertainties, and to indicate the type of treatment they referred to. Click here to see the survey, and click here to see the participant information sheet. Details on the full priority setting process were captured on a promotional flyer, which can be seen here.