Pain Management Panel consultations: report

Methodology

A three-stage process was adopted in the delivery of this work:

1. Recruitment of the panel

2. Exploration of themes with panel

3. Prioritisation exercise with panel

Recruitment

In order to increase the impact and address inequalities facing people with chronic pain, the Scottish Government (SG) sought to increase the range and diversity of voices of lived experience of chronic pain to inform implementation of the Framework. For this project, SG were keen to gather feedback from seldom heard voices within the chronic pain community, i.e. individuals who have not been involved in previous research or advocacy work related to chronic pain.

TLB worked with an external recruitment agency, Taylor Mackenzie, to recruit members of the panel. Taylor Mackenzie promoted the opportunity to contacts within their research database, and took interested parties through an eligibility screener which was designed by TLB.

A sampling framework was designed to ensure diversity within the panel across participants’ experiences, circumstances, and characteristics and to reflect the available evidence on the demographics of chronic pain in the UK. A panel of 16 individuals from across Scotland with lived experience of chronic pain was assembled. The size of the panel, while limited, was deemed to be reasonable given the depth of work required, iterative nature of the anticipated engagement with panel members, and the resource parameters of the research. More detail on the size of the panel is included in the Data Limitations section. The demographics of the panel are shown in Figure 1.

Figure 1: Panel demographics

Gender

44% male (7)

56% female (9)

Age

19% aged 18-30 (3)

31% aged 31-54 (5)

50% aged 55+ (8)

Ethnicity

81% White British (13)

13% mixed/multiple ethnic groups (2)

6% Asian – Pakistani (1)

Location

25% Central Scotland (4)

44% Urban/City (7)

19% Rural (3)

13% Remote rural (2)

Socio-economic status

50% B-C1 socioeconomic group (8)

50% C2-E socioeconomic group (8)

Impact of pain

19% No impact (3)

44% Little/low impact (7)

38% High impact (6)

During the recruitment stage, panel members were asked to indicate their upcoming availability (e.g. if they would be free morning, afternoon or evening), and focus groups of 3-6 people were arranged based on these preferences.

Some members of the panel found taking part in a virtual focus group difficult (either through availability or technical difficulties) and opted to take part in a one-to-one telephone conversation instead.

The Delphi method

Engagement with the panel was conducted through an approach known as the Delphi method. This is a structured process that uses a series of activities to gather information from a panel of experts in a complex area. It is an approach rather than a fixed method and is adapted to meet the research needs^[1]. In general, there are two or three meetings of experts on a topic. The first Delphi meeting involves an open discussion around a range of key themes which are summarised. The second, and any subsequent meetings, consists of presenting themes from the first round of consultation to the group and asking them to reach a consensus or prioritise the key themes.

Exploration of themes with the panel

In the first engagement session, panel members shared their experiences with chronic pain services, discussed enablers and barriers to treatment and their views on person-centred care.

Prioritisation exercise

Following analysis of the first round of consultation with the panel, four overarching themes were identified as areas for further exploration:

• What support participants find most useful in managing pain.
• What the biggest challenge or barriers are to accessing support.
• What helps participants feel more in control of their pain.
• What they consider most important in the delivery of chronic pain services.

TLB devised a list of priorities under each theme based on the learning from initial engagement sessions with panel members, and asked members of the panel to rank each in terms of the importance or relevance they attached to them. These priorities are set out in Chapter 4, which presents our analysis of the prioritisation exercise.

Data limitations

The findings are based on interviews and focus groups with a sample of 16 people across Scotland with lived experience of chronic pain. The study was carefully constructed to ensure internal validity in answering the research questions without bias The sample, while limited, was designed to reflect the population of those living with chronic pain in terms of age, ethnicity, socio-economic status and impact of pain (based on data published by Public Health England). However, it is a small sample, and as such the findings should not be interpreted as representative of the wider population but rather as detailed qualitative information and illustrative examples of the panel’s experience of living with chronic pain.

Focus groups as a method to gather data have many benefits; they allow people to share experiences, identify points of consensus or mixed views, and develop ideas in an iterative process. However, this forum limits the time each person has to talk about themselves and may influence how much personal information participants choose to share.