How patients can inspire the next generation Our future in their hands: How patients can inspire the next generation Prof Annie Cushing, Dr Siobhan Cooke, Mrs Riya George

Introduction Who are we and why are we here?

Not just in health…Engage Conference 2016 QMUL becomes first institution to be awarded Gold Engage Watermark for public engagement “Since the early days of the NCCPE we have been championing a culture in higher education where public engagement can thrive. Paul Manner, Director of NCCPE

Delivery of training, education and learning opportunities “It is important to recognize that how people train is as important as what is taught. Education should include training that is co-designed and co-delivered by people with lived experience, in community settings” (page 34) Realising the Value (2016), Making the change: Behavioural factors in person- and community-centred approaches for health and wellbeing at: http://www.nesta.org.uk/publications/making-change-behavioural-factors-person-and- community-centred-approaches-health-and-wellbeing Final thoughts

Spectrum of involvement – Towle et al 2010 Paper-based or electronic case or scenario Standardised or volunteer patient in clinical setting Patient shares his or her experience with students within a faculty- directed curriculum Patient-teachers are involved in teaching and evaluating students Patient-teacher(s) as equal partners in student education, evaluation and curriculum development Patients involved at institutional level in addition to sustained involvement as equal partners in student education, evaluation and curriculum development.

Reciprocal benefits? What are the (potential) reciprocal benefits of involving patients in the education and training of future healthcare professionals? Groupwork discussion

Learning from shared experiences What have your experiences been to date? What have you learned? How might you translate your learning into guiding principles for others wishing to expand their practice? Groupwork

The Vancouver Statement 2016: “The patient’s voice in health and social care professional education” Patient can be viewed as an: “ umbrella term to include people with health conditions (service users, client, consumer etc) their caregivers (including carers, parents and family members) and others with relevant lived experience (community member, citizen or lay person), recognizing that no single word is adequate or universally acceptable”

A final thought To what extent did the workshop meet your hopes? What did you encounter that was relevant to you and the development of your practice? What different experiences would you hope to bring to a workshop of this nature in a years time?

Next Steps and Collaboration Do you have patients who may be interested in being involved? Would you like to supervise a student working with a Patient Health Mentor? Next Patient Forum Sept 2017

“The language of patient involvement is confused and emotive “The language of patient involvement is confused and emotive. (…) Patients disagree about the labels with which they prefer to describe themselves (…) and their preferences may change during the trajectory of illness”. (Towle et al. 2010) Point being – being person-centred or patient centred – depends on where the patient is at just now – flexible to the patient – up to the level they want and can manage just now.

http://www.nationalvoices.org.uk/principles-integrated-care

Person-Centred Approaches – The 3 Steps Step 1. Conversations to engage with people Covers the baseline of awareness, skills, knowledge and behaviours. Step 2. Conversations to enable and support people : May involve use of models and techniques such as self-management support, shared-decision making and health coaching. Evidence based models can be helpful to underpin these approaches, such as experience based co-design and appreciative enquiry. Step 3. Conversations to manage complexity This is where decisions carry significant risk for individuals and there is likely to be tension between professional and personal preferences Step 1: “This baseline of person-centred approaches acknowledges and respects that all conversations are two way and that the way in which the conversation is conducted can impact on all those involved and affected” Step 2: “The strength of the skills lie in how to engage the person or their advocate as an active partner - which is the foundation for the sharing of responsibility for an individual’s health and wellbeing.” Step 3: “In order for person-centred approaches to work for people seamlessly, in these most complex of situations, service delivery must be integrated across networks of relevant organisations and commissioners” This is about care and not education but could be a framework for educational approaches – what we want students to learn Just have headings and read out the elaboration