Patient Experience and Involvement

By completing this theme you will be able to demonstrate the ability to:

  1. Actively promote patient involvement.
  2. Be aware of the different ways patient experience and outcomes can be measured (e.g. PREMs and PROMs).
  3. Access some of the patient/user groups that enable the patient voice to be heard.
  4. Describe the process of authentic dialogue with patients, sometimes known as co-production, and be familiar with examples.
  5. Work with patients, families and user groups to improve services.

What you need to do over the course of the programme:

  • Attend the Patient Experience and Involvement PICH evening seminar(s) – see PICH website for dates.
    This will give you the chance to hear from professionals who have worked closely with patients and learn how powerful that can be.
  • Follow a patient journey or talk to patients about their condition.
  • Conduct an authentic patient dialogue for example emotional mapping, co-producing an event with patients, working with patients to improve a local service.
    If you are able to do this, how can it support your project(s)? If you are not able to do this, ask around and see if you can participate in work that others are doing.
  • Write a reflective summary of the work, including your thoughts on the dialogue itself if you were able to do one. Use the Form for trainee to complete for each theme (on this website) – or a tool of your choosing to record your reflections.

Ideas for you to consider within this theme:

  • Point of care: talk to patients. Find out how their condition affects their family and social life.
  • Follow a patient journey. Adopt a patient. If you are on duty when a child presents with a new condition, make an effort to ‘adopt’ the patient and go along to an appointment, visit them at school or in the health visitor clinic, visit them at home and meet their GP. Good examples are the child with newly diagnosed diabetes, the infant with Down’s Syndrome or the teenager admitted with deliberate self harm.
  • The team at Imperial has employed a Practice Champion Project Manager. She is recruiting ‘practice champions’ – parents and young people who volunteer to promote child health for their practice population. Get in touch and join in one of their sessions, to find out more. Contact:
  • Action for Sick Children completed a large survey to understand why children are brought to A&E . Look at the results and consider how the findings and recommendations can influence change in your local area or in regards to your own project. Action for sick children: Web Link
  • Read the toolkit on the Kings Fund Website which explains how to do co-production.

There are lots of different ways of approaching this theme. Be creative! Consider qualitative studies, face to face interviews, social media, surveys and imaginative ideas eg photographic mood boards of positive and negative things.

Ideas that have already been developed – to stimulate your thinking:

Case Study 1

Use authentic dialogue with patients to tailor services that meet their needs. The TalkLab team worked with young people with Sickle Cell disease. Using co-production techniques they surfaced the key priorities of these young people, who: -suffered significant stigmatisation; -had insufficient knowledge of their own condition;  -and experienced poor communication from professionals. As a result, the team created the Talk Lab app – ‘having better conversations’.

Case Study 2

Listen and learn from patient stories – Case exchange. A London School of Paediatrics trainee set up regional Level 1 training. Of the four cases presented monthly, one is always presented by the patient or parent themselves. Hearing the story from the patient is very powerful and provides rich learning for trainees.  Patients report that they, too, benefit from the sessions. Senior trainees and consultants now come to learn too.

Case Study 3

A Whatsapp group. One of the PICH participants 2014/15 Sarah Blackstock set up a Whatsapp broadcast group to improve knowledge and engagement of adolescents with Type 1 diabetes. Patients participated in the design during a co-production session, and agreed it would improve motivation and engagement. All children aged 11 and over were invited to participate and 20 patients and 4 staff are members. Following qualitative analysis patients highlighted their improved access to information, and the benefits of talking to others with diabetes. Mean HbA1c rates in the group improved from 9.7% to 9%, and median from 9.8% to 7.9%.

Case Study 4

Working together across boundaries to improve care for children and young people with Epilepsy – Pagoni (Nitsa) Ladikos, Paediatric Registrar, PICH Participant 2014-2015:

” We ran a Paediatric Epilepsy Co-design Event (attended by 59 individuals) facilitated by an Epilepsy charity. Four key improvement areas were identified within health service delivery for CYP with Epilepsy: Communication, Support and access, Education and information and Transitioning to adult services. Participants suggested six service interventions to address these improvement areas, which are being presented to local clinical commissioners. Data review, patient experience and co-design has proved an invaluable combination, allowing in depth review of a problem. Incorporating all stakeholders, particularly service users, is of key importance in planning and running successful integrated services. “

Case Study 5

A group of patients with allergies were brought together by a PICH participant who wanted to make a difference to their experience. One of the outcomes from the workshop was that the young people formed a WhatsApp group. One of the patients walking home from school started to have difficulty breathing. She decided her mother wouldn’t be of use and approached one of her WhatsApp mates. The person she spoke to stayed in contact with her until till she got home by which time they had both agreed that the episode was a panic attack and not anaphylaxis.

For the PICH participant this demonstrated the value of bringing patients together and the power of peer to peer support.

Further reading / resources:

Patient Reported Outcome Measures (PROMs) assess the quality of care delivered to NHS patients from the patient perspective.  PROMs are now mandatory practice in the NHS for elective surgical procedures.

Patient Reported Experience Measures (PREMs) seek to assess the experience of receiving care.

  • Patient Voices: Link

Patient voices is an organisation focussed on unearthing stories to deliver insights that can drive change.

The NHS Patient Survey Programme systematically gathers the views of patients about the care they have recently received, this is run by Picker Institute Europe, co-ordinating the NHS acute, mental health and primary care patient survey programmes on behalf of the Care Quality Commission.

  • Altogether better: Link

Altogether Better is an NHS national network organisation, supporting health and care services across the UK to introduce our model of Collaborative Practice. Their approach is used in over 130 GP practices and has also been tested in other health and care settings, including acute hospital trusts, mental health, young people’s services and care homes

This toolkit gives a step-by-step guide to improving patient experience of health care using a technique called experience-based co-design (EBCD).

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