PPI = CCI Consumer and commuity involvment

Recently I wrote about PPI in the UK (https://speakingmylanguages.blogspot.com/2024/05/patient-and-public-involvement-ppi.html)

Today, at the Speech Pathology Australia Conference, I had a conversation with Prof Deborah Hersh from Edith Cowan University who wrote this paper (among others): 

Hersh, D., Israel, M., & Shiggins, C. (2021, in press). The ethics of patient and public involvement across the research process: towards partnership with people with aphasia. Aphasiology. https://doi.org/10.1080/02687038.2021.1896870

She informed me that PPI in the UK = CCI in Australia

In 2016, the NHMRC published the "Statement on consumer and community involvement in health and medical research" https://www.nhmrc.gov.au/about-us/publications/statement-consumer-and-community-involvement-health-and-medical-research and define the elements of CCI as:

"Community – a group of people sharing a common interest (e.g. cultural, social, political, health, economic interests) but not necessarily a particular geographic association. Different types of communities are likely to have different perspectives and approaches to their involvement in research." (p. 6)

"Consumer – patients and potential patients, carers, and people who use health care services." (p. 6)

Collectively, ‘consumers’ and ‘community members’ may be referred to as ‘the public’." (p. 6)

"Stakeholder - An individual or group from within or outside research organisations with a key interest in research. This might include members of consumer organisations, professional bodies, government agencies, non-government organisations, industry, or research funders as well as consumers and community members. Stakeholders can provide support or expertise and may influence decisions about the research and its findings." (p.7)

NHMRC are currently undertaking a review of this document.

Seldom heard voices in service user involvement

While at BSLTRU I had a chance to learn more about the work of Dr Kath Broomfield and her new book that she edited with Anna Volkmer: Seldom heard voices in service user involvement: The how and why of meaningful collaboration https://www.jr-press.co.uk/product/seldom-heard-voices/. Here is the description from the publisher's website:

Many communities are often excluded from research, service development and public consultations because they are considered too difficult to engage with. This list of seldom heard voices includes people with communication difficulties and/or mental health diagnoses, children and young people, minority and ethnic groups, and many more. Increasingly, there is a drive to be more inclusive and what sparse guidance there is suggests there should be engagement and communication with the relevant community, involving them in decision-making, co-design or co-produce at all levels. But how is this carried out?

Seldom Heard Voices in Service User Involvement is the first book that shares experiences and examples of service user involvement with communities of seldom heard voices. As well as being a practical resource for clinicians, it will provide a resource for future health and social care professionals and researchers. Additionally, it will bring together expertise and experience from across a range of seldom heard voices, ultimately sharing and maximizing the transfer of knowledge and resource.

There are many synergies with our new Children's Voices Centre and our book Listening to Children and Young People with Speech, Language and Communication Needs (https://www.jr-press.co.uk/product/communication-needs). Kath gave me a copy of her book and I have already enjoyed reading it.

Patient and public involvement (PPI)

I am pleased to note that "patient and public involvement (PPI)" is mentioned frequently in the UK. It seems to be the acronym that has grown from the phrase that I heard frequently during my last visit to the UK: "nothing about us without us". 

Here is an example of PPI from the Accelerated Access Collaborative (AAC) in the NHS: https://www.england.nhs.uk/aac/what-we-do/patient-and-public-involvement/

"Patient and public involvement is important to the work of the Accelerated Access Collaborative (AAC). We work with people and communities to ensure that the research priorities and innovations we support are developed in collaboration with people with lived experience of a particular service or health condition. We work with patients, people who access services, carers, charities, community groups and others to bring diverse perspectives into our work."

Here is the NHS PPI strategy: https://www.england.nhs.uk/aac/publication/accelerated-access-collaborative-patient-and-public-involvement-strategy/

"Working with our patient partners and stakeholders, we have developed The patient and public involvement strategy 2021-2026. This strategy sets out six aims:

1. Ensure that a diverse range of patients and the public, especially people with lived experience, are involved in influencing the direction and delivery of our work programmes.

2. Proactively address equality and inclusion in our work.

3. Work collaboratively across the Accelerated Access Collaborative (AAC) partnership and wider system partners to embed a culture of patient involvement across AAC programmes.

4. Support patients and public partners to have a meaningful and positive experience while working with us.

5. Understand our impact and outcomes.

6. Communicate our impact."

   I have learned from Prof Yvonne Wren about how they have PPI groups (e.g., YPAG - Young People's Advisory Group) who are consulted at various times during their research. For example, their team included a range of stakeholders to co-design in their research, then the PPI groups were consulted to provide feedback before being tested.  

   PPI groups can be established outside of the data collection process. PPI discussions are not included as research data unless ethics approval has been gained and signed consent has been received.
   

    Here are some associated terms: "co-design", "co-create", "collaboration", "listening to children's voices".