Shifting the paradigm: Project update

Shifting the paradigm is a journey unifying a team of lived experience partners, with clinical and improvement teams. This journey represents a new chapter of our evolving relationship underpinned by learning, growth, and a meaningful collaboration WITH, BY and FOR young people.

WHAT HAVE YOU LEARNED SO FAR?
1- To put young people at front and centre of our journey:

I can’t believe it’s already 2 years since we set up our internship program in adolescent and young adult rheumatology at UCLH, where young people using our service, volunteer their time to improve it and shaped it around what matters most to them. Aiming to broaden this collaborative to young people who can’t travel the hospital to volunteer, we introduced  recently a QI partnership scheme where young people can work on QI projects remotely.
Imani and Sara, our new interns; and Sophie, our first QI partner, have provided invaluable input to this project. We are also very fortunate to have a wonderful and talented cohort of young people who supported us over the last year particularly Lauryn, Aisha, Rhea, Tom, Harry, Luke, Egor, Flora, Sana, Annabelle and Amani who have given us time and energy in the planning and delivery of our service improvement journey.

2-
To spend time planning and setting up the project infrastructure: Don’t rush to the D before the P!

Deadlines can be tricky in a complex system like the NHS, particularly during this challenging time (industrial actions, shortage of staff etc..)
Few weeks after the start of our project, our team realised that we have to take a step back as we felt that there is a lot to do in relation to setting up the project infrastructure (P). We had to plan for this carefully before we move to the (D): delivering the project: the peer support sessions.
We used action trackers (template enclosed here: action tracker template) which we kept updating throughout the process.
Example of challenges we faced:
1-    we had to address setting up the right online tool and platform to deliver our peer support online sessions.  To use these tools needed guidance from our transformation team, obtaining license; all had to be aligned to our trust governance and policies.
2-    We had to plan for the recruitment of our peer support coordinator (young people working with clinical team to coordinate young people care and facilitate the peer support sessions). Our young volunteers helped us with the process from Job Description to joining our interview panel.
3-     We spent a lot of time working on our project outcomes’ measures. Something I took for granted when I wrote the project proposals a year ago.
4-    We are starting small with online sessions co-designed and co-facilitated BY, WITH and FOR young people. We are collating feedbacks and regularly tailoring our session structure and themes accordingly.

3- To seek lived experience partners and clinicians insights on the practicality and the perceived value of psycho-social measures before using them.  

There is growing evidence that using validated outcome measures is important to assess the impact of health coaching on patients’ activation (knowledge skills and confidence in self-management).
After literature review, we identified validated psychosocial measures in young people with long-term conditions.
We initially tested these questionnaires in our health coaching pilot clinics. Surprisingly we observed that only few young people answered the questions, and fewer clinicians used them as part of clinical practice.
This observation created a need to take another step back and challenge our assumptions that validated questionnaires in research can be used in routine practice. We had to think carefully about values and outcomes that matter most to young people using our service, and to the clinical teams caring for them.

We initially sent out the original questionnaires, in the form of a survey, to our young people interns, QI partners and our Public and Patient engagement network. We also sent the same survey to our clinical team. We collated feedback about the practicality and relevance of the questions in our clinical settings.
Then, we arranged for a team away day where clinical team and young people came together and engaged in a group activity: peer-to-peer support defining our mission and refining our measures.
After rating the questionnaires, young people and clinicians reviewed, modified the questions together and made recommendations for further changes.

Subsequent focus group meeting helped to finalise the questionnaire: which is now more user friendly, clearer and reflect the needs of young people.

As next step we will be testing this questionnaire in our peer support sessions and collecting further feedbacks before we implement it in our routine practice.

This particular piece of work could not happen without having an established relationship between our  clinical team and young people, which helped us to create an authentic dialogue and maintain psychological safety in our team activity, where everyone in the room had a voice and shared their views openly.

4-Our vision is evolving from Peer-to-Peer support to HangOUT: Hang Our Unified Team.

The last few months helped us to build a sense of community and a unified team of clinicians and young people: our authentic relationship is underpinned by empathy and integrity.
We feel that normalising this model of collaboration can help not only to empower and support young people to develop their activation (knowledge, skills, and confidence) in managing their own health, but can equally help clinical teams to develop their activation in relation to embedding holistic care as part of routine practice.
One of the highlights of our recent engagement event, co-facilitated by our young intern Imani, was ‘the role play session’. Our ambition is to use this approach to develop our jargon dictionary (the latest term added to our dictionary was “local chemist” instead of “community pharmacist” ); and notably the use role play simulations for regular staff training.

Imani facilitating our most recent event: Hangout space

Role play:  clinician is sitting in the shoes of a young person; and a young person playing the role of a clinician in a 20mn consultation.

Young people using art work to visualise the challenges they face as they navigate health systems

WHAT COULD OTHERS LEARN FROM YOUR EXPERIENCE?

1-    Put your lived experience partners at the heart of your journey and RIGHT FROM THE START.
They are the expert by experience and their input will complement the clinical expertise. As a health system we should invest in our assets!

2-    Keep the connection going between your team and your lived experience partners. they are all human of the same system.

Having an ongoing dialogue in this project, clarified even more our direction: a new model of holistic care underpinned by a meaningful collaboration.
Shifting the paradigm vision goes beyond health promotion, it’s about shifting the culture and power dynamic in health systems where everyone expertise is appreciated, mobilised and optimised.

Finally, we would like to say massive THANK YOU to every Q member who supported us over the last year. Your guidance is so invaluable. We look forward to sharing more updates (including a short film) as we immerse ourselves more into this wonderful journey.