Patient And Public Involvement (PPI) and stakeholder involvement in the Person Based Approach (PBA)

A ‘stakeholder’ is anyone who could have a ‘stake’ in the intervention, including potential users and potential providers (such as healthcare professionals or other practitioners, policy makers, businesses or community organisations). Patient and Public Involvement (PPI) in research is a particular type of stakeholder involvement.

PPI and stakeholder involvement is at the centre of the person-based approach (PBA), and is vital to ensure that interventions are engaging and useful for the people who use them. 

How PPI and stakeholders are involved in the PBA is extremely flexible, and includes:

  • Contributing as an essential part of the core research team to all key decisions about intervention planning, optimisation and/or implementation.
  • Contributing to one or more additional consultations – for example, through workshops, focus group discussions or providing online commentary. This kind of PPI activity can be supplemented by qualitative research.

Aleppo

Aleppo (/əˈlɛpoʊ/; Arabic: ﺣﻠﺐ‎‎ / ALA-LC: Ḥalab, IPA: [ˈħalab]) is a city in Syria, serving as the capital of the Aleppo Governorate, the most populous Syrian governorate.[7] With an official population of 2,132,100 (2004 census), Aleppo was the largest Syrian city before the Syrian Civil War; however, now Aleppo is likely the second-largest city in Syria after the capital Damascus.

When PPI and stakeholders contribute as part of the core research team to key decisions about intervention planning, optimisation and implementation they are normally involved throughout. Sometimes they may contribute to one specific phase, such as planning or dissemination of the intervention.

Benefits:

  • Builds a relationship of equality with stakeholders over time and enables in-depth discussions about the design and conduct of the research.
  • Supports active stakeholder involvement from people with a good understanding of the intervention’s aims and methods.

PPI and stakeholders can contribute to specific consultations – for example:

  • Community group discussions or workshops
  • Interviews or focus group discussions
  • Online commentary or surveys

Benefits:

  • Enables fresh perspectives from those seeing the intervention for the first time and who are less aware of and committed to the research team’s aims.
  • Can provide insights into the perspectives, beliefs and experiences of a large number of diverse, novel users, which may be different from those of the stakeholders within the research team.

Qualitative research

For some PBA activities, qualitative research provides a valuable means of gaining insights into the perspectives, beliefs and experiences of the target population. Examples of when qualitative research may be useful to supplement PPI and stakeholder input include:

  • Think-aloud interviews or longitudinal qualitative studies with people who are new to the prototype intervention to see how they view and use it
  • Qualitative process analyses with people using or delivering the completed intervention in a clinical trial or in real-life implementation

Some PBA activities can be carried out with stakeholders or research participants – or both. For example:

  • Sometimes PPI members of our research team do think-aloud interviews to give detailed feedback on an early version of the intervention, so we can pick up any obvious problems before we do a full qualitative study of how novice users view it.
  • Sometimes participants in focus groups or interviews express an interest in helping us use their feedback to improve an intervention, and so join our team as full stakeholder members of the co-design team.

Embedding diversity in PPI and stakeholder involvement

It is vital to make sure your PPI and stakeholder activities allow and encourage a wide range of people to take part.

  • Some people may feel more confident to input if they are in a group of people they know or who are like them.
  • People with less confidence, time or motivation may prefer to input if they do not have to travel, make a long-term commitment or take part in large discussion groups.

How PPI and stakeholders are involved in the PBA is extremely flexible, and will depend on the aims of your project and the time you have. 

Here are some varied examples of how we’ve incorporated PPI and stakeholder involvement in the PBA across 3 different projects.

Ongoing adaptations to a live intervention to help prevent Covid-19 transmission in the home were identified and agreed with a stakeholder panel including members of the public, GPs, behavioural researchers and public health practitioners. Adaptations were based on changing evidence and government guidelines, as well as feedback from qualitative thinkaloud interviews and surveys to understand barriers and facilitators to engagement. 

Stakeholders shared their perspectives on adaptations via regular online meetings, and feedback forms about revised intervention content.

Working with the same panel members over time enabled a rapid, agile approach to intervention adaptations, benefitting from PPI and stakeholders’ understanding of the overall intervention aims and context. 

3 workshops were held with healthcare professionals from the target population.

  • Workshop 1: Discussed barriers to the target behaviour (reviewing antibiotic prescriptions and stopping when no longer needed) and planned intervention components with stakeholders.
  • Workshop 2: Discussed how best to implement the intervention in different hospital contexts.
  • Workshop 3: Refined the intervention with stakeholders who were about to implement it to make sure it was feasible.

Some stakeholders from the workshops also joined the research team to provide ongoing stakeholder input to intervention decisions via online meetings.

In addition to these stakeholder activities, qualitative think-aloud interviews were conducted with healthcare professionals who had no involvement with the research. This enabled us to:

  • Gain in-depth feedback on all intervention content and identify possible barriers to engagement, which there was not time to do in the stakeholder workshops.
  • Explore perspectives of the intervention with a broader range of healthcare professionals, including people who were sceptical about the intervention aims and feasibility

The intervention content was created with two PPI contributors on the research team who had experienced a stroke.

The research team also made regular visits to two community groups for stroke patients and carers to discuss experiences of high blood pressure, perceptions of self-monitoring blood pressure and sharing readings with the GP, and the kind of support that would be useful. Sometimes mock-ups of key intervention components were shared to gain some initial feedback on the value and feasibility of these ideas. 

Qualitative research was also conducted with patients and healthcare professionals to understand detailed perceptions of the intervention content and to explore the main barriers to engagement. 

  1. Morton, K., Ainsworth, B., Miller, S., et al.. (2021). Adapting Behavioral Interventions for a Changing Public Health Context: A Worked Example of Implementing a Digital Intervention During a Global Pandemic Using Rapid Optimisation Methods. Frontiers in Public Health, 9, 369, 10.3389/fpubh.2021.668197
  2. Santillo M, Sivyer K, Krusche A, Mowbray F, Jones N, Peto TEA, Walker AS, Llewelyn MJ, Yardley L; ARK-Hospital. Intervention planning for Antibiotic Review Kit (ARK): a digital and behavioural intervention to safely review and reduce antibiotic prescriptions in acute and general medicine. J Antimicrob Chemother. 2019 Nov 1;74(11):3362-3370. doi: 10.1093/jac/dkz333. PMID: 31430366; PMCID: PMC6798845.
  3. Rai, T et al. (2020). Optimizing a digital intervention for managing blood pressure in stroke patients using a diverse sample: Integrating the person‐based approach and patient and public involvement. Health Expectations, https://doi.org/10.1111/hex.13173