What Does a Patient Director Do?

by David Gilbert

April 9, 2016

Lots of people have asked me: ‘what does a Patient Director do’? Some of my blogs have addressed this in different ways. For example, by focusing on illustrative examples of the work. But none of have described what we are up to now with our patient and public focused work in the Sussex Musculoskeletal (or MSK) Partnership (Central). The region covers Brighton and Hove; Mid-Sussex and Horsham; Crawley.

Remember, the role of the Patient Director is new. And we are learning. I think providing patients with such opportunities to support and influence change in organisations should be developed significantly. See here for my views on why roles such as these could help transform the quality of health care.

I have been up to my eyeballs in the joyous endeavour of writing corporate reports. I thought it might be useful to share one of them more widely. The report below is adapted slightly from one that went to our commissioners.

I am afraid that it still lapses into corporate-speak. But I hope it makes sense. My intention is not just to 'aid transparency’ but share learning and check out whether it all makes sense to others. Comments and advice welcome.

 1000s of Everyday Conversations - Plans for patient, carer and citizen-focused work


  1. About the work
  2. Progress
  3. Future direction
  4. Programmes of work
    • Patients and Carers as Partners
    • Learning from Patients’ Experiences
    • Patients in Control: Self-management support and Information Provision

1.0 About the work

The overall aim of the programme is to ensure that the Sussex Musculoskeletal Partnership (Central) or SMSKP vision for services is upheld and that we continue to focus on ‘what matters’ to patients, support people to be in control of their health and decisions and ensure they receive excellent healthcare experiences leading to better outcomes.

This can only be done if the vision of patients as partners at clinical practice level is mirrored in the Partnership’s cultures and systems. Having a Patient Director is an important first step. But the job of Patient Director is not to ‘be’ or ‘articulate’ the patient perspective, or to be the ‘channel’ through which voices are heard, but to catalyse a tri-partite leadership model (clinical-patient-managerial) at all levels – corporate, service, team and individual.

This requires us all to model partnership working and build trusting, valued relationships between staff and with patients as equal partners. This approach draws on emerging models of patient and public engagement, such as experience-based co-design, community development and patient leadership. For more on patient leadership, click here

This programme of work is about connections - ensuring that high quality relationships between professionals and patients and carers are part of everyday practice, valued, supported, enabled and embedded in the co-design and co-delivery of the Partnership’s functions and services.

It also means helping to ‘hard-wire’ the systems, tools and processes so that work to achieve our patient-centred vision is part of normal business. This way of working fully aligns with the Partnership’s overall visions and values.

2.0 Progress

The Patient Director has been in post since June 2015, since when he has:

  • Developed an understanding of context, systems and processes.
  • Established relationships with clinical and administrative staff.
  • Promoted shared understanding of patient, carer and community engagement.
  • Identified issues and challenges concerning the work.
  • Undertaken specific patient, carer and community-focused work (see section 5).

In the first year of the Partnership, much of the patient and carer work was necessarily ad-hoc and reactive, due to the need to build the infrastructure and operations of the new partnership and a new way of delivering services. Since the PD has been in post, we have been building the foundations of a more strategic approach.

For example, we have initiated the Patients and Carers Forum (two meetings held so far), developed a systematic patient experience survey, worked with the voluntary sector to develop self-management support (SMS), improved information (e.g. the website and appointment letters) and undertaken early specific involvement activities (e.g. for rheumatology redesign, input into systems improvement work).

Work has also begun on developing patient-centered culture and systems. For example, a payment policy has been agreed that will see patients involved in strategic work with the Partnership being offered a £150 per day honorarium. This is in line with NHS England good practice. The Patient Director has initiated a series of internal learning sessions on patient and public work and begun discussions about developing patient story videos as training and education tools (see also section 5.1).

3.0 Future Direction

We need to consolidate these activities into a more cohesive and integrated approach. The principles for our next steps are that activities should be:

  • Needed (i.e. based on gaps identified or learning)
  • High impact (things that will make a real difference)
  • Aligned to corporate priorities
  • Hard-wired (embedded into the Partnership’s systems and processes)
  • Feasible (given available resources and capacity)

We now need to deepen and broaden the work. This includes:

  • Raising awareness of the work and deepening the culture of partnership– at corporate, team and individual level.
  • Making sure that data on patients’ experiences feeds properly into governance and informs service improvement and change across all pathways and all localities.
  • Extending the reach of our work to develop meaningful partnerships with local stakeholders so as to work better together on patient and public work.
  • Creating meaningful opportunities for patients and carers to work as equal partners in a wider variety of activities, e.g. strategic work, governance, service improvement, research and training.
  • Creating more active leadership and support from different parts of the organisation.
  • Embedding systems and processes, policies and procedures that support the work.

In order to do the above, the Patient Director will focus on two main areas, ensuring that other areas of work are fully supported:

  • Patients as partners for change – to foster capacity amongst patients and staff to work in partnership. In particular, through developing the People Bank that will enable patients and carers to take more active part in the Partnership’s work.
  • Patient-centred learning and improvement – in targeted areas of work, such as:
    • Ensuring patient experience data feeds into improvement (via MDTs).
    • Dedicated work on supporting development of the pain pathway.

4.0 Programmes of Work

Below, I provide an overview of the programmes of work that the Patient Director oversees and that actively contribute towards the vision for this work.

  • Patients as Partners (or patient and public engagement)
  • Learning from Patients’ Experiences
  • In Control: Supported Self-Management and Information Provision

4.1 Patients and carers as partners: Patient and Public Engagement

The aim of this workstream is to ensure we work with patients, carers & citizens as equal partners in the design and delivery of better health in the community and our services.

Patient and Carer Forum: Two Patient and Carer Forums have been held (the last one in Feb). Members comprise patients, carers, clinical and non-clinical staff and external stakeholders. Terms of reference have been agreed and the structure and format of meetings is evolving. Emphasis is being given to focusing on a key issue in depth (next one on self-management support), making sure the Forum is kept updated on service progress, having a solution and improvement focus and stressing the need to model trusting relationships as a group.

People Bank: We will develop a cohort of 12 trained, supported, paid and valued patients/carers – who will be partners in the co-design and co-delivery of governance (e.g. on MDTs, or other fora), service improvement, training or research. We are submitting a proposal that this work forms part of our year two CQUIN targets (additional payment for meeting performance targets not originally in our bid)

System and service improvement: Patients have been included in systems thinking work (a particular approach to improving services) that has led to a deeper understanding of the consequences of ill-health and particular potential solutions (such as an opt-in appointment letter). The Patient Director will support the pain pathway lead to ensure that patients and carers co-design and co-deliver work to improve the service that patients with pain receive. This will include facilitating discussion groups, having patients/carers as part of the systems thinking work that will underpin pathway redesign and on the pain MDT.

Governance: We will recruit, support, train and pay patients/carers to be on MDTs, starting with rheumatology and pain MDTs and evaluate progress with a view to rolling out to other MDTs.

Culture and systems: Patients have been involved (to a limited extent) in our Values and Vision events. We will support at least two patients to be members of the Culture Club that helps put our values into practice. One idea is to have a ‘patient-focused’ issues theme for the Club that reflects ideas generated in the Vision and Values events (e.g. a project called the ‘PCA Sponge’ whereby Patient Care Advisers gather and reflect on learning about patients’ experiences while they have been on the phone).

Education and training: We will support patients to help co-design and co-deliver training and education sessions (such as inputting into our current shared-decision making training; future plans for self-management support training) and be part of bespoke activities, such as developing patient story videos and co-designing and co-delivering induction sessions.

Supporting wider engagement - We have a growing database of people who are willing to become more involved and are considering how best to support this wider pool of people.

Specific Engagement work - One off involvement activities have included a rheumatology patient discussion group that fed into pathway redesign work (included acceptance in principle of patients on the MDT, consideration of peer support work and need for more work on information provision). We will continue to undertake specific engagement work as required (e.g. in response to MDTs wanting to explore particular issues; cross-cutting issues arising from patient experience survey)

4.2 Learning from patients’ experiences

The aim of this workstream is to ensure that the MSK Partnership focuses on what matters to patients and carers, and that we learn and improve through gathering and using feedback about experiences.

 Complaints work: We have developed our complaints system that generates regular learning reports. These will continue to inform improvement and complement a wider set of patient experience data from other sources.

Patient Experience data gathering: Last year, a small scale questionnaire included the Family and Friends (FFT) question (to what extent are you likely to recommend this service to your family and friends?). We have now initiated a patient experience survey for patients discharged from community specialist clinics. This includes the FFT question and about experience of the booking process, involvement in decisions, information received, compassionate care, etc. It also asks about what ‘worked well/needs improvement’. The findings can be broken down across the three CCG areas and by pathway. This work is part of our CQUIN (additional payment for performance targets) for year two and a report will go to the CCG in April.

 Making sense and making use of data - The next step will be to find ways to use the data. This includes making sure relevant data reaches the right people in useful manner, conducive to assurance and improvement. Regular round ups of findings will go to the Patient and Carer Forum, Integrated Services Management Group, Clinical Quality Group and Operational Group and will be fed to MDTs. It will be crucial to work with clinical and pathway leads to ensure that data is used for assurance and improvement. This is also dependent on patients being partners in interpreting data and coming up with joint solutions – a possible role for the Patient Forum and patients on MDTs.

Bringing it all together - Other small scale feedback projects are going on. We need a coherent approach and not bombard patients with questionnaires. Patients at one of our community specialist clinics are asked their views on the environment. People using physiotherapy fill in a ‘Just a Minute’ questionnaire that includes the FFT and ‘what works well/could be improved’. Patient-centred outcome measures (PROMs) should be aligned to patient experience work. We are implementing the MSK-HQ – a generic measure to assess outcomes – across the service (starting with people who have spinal problems), and also the SURE score (how confident people feel about having been involved). The Patient Director has close links to the clinical lead for the PROMs work.

Learning across the pathway - We will need to find ways to measure patients’ experiences across the whole pathway. This includes diagnostics. The Medical Imaging Partnership has developed a questionnaire; we also need to work with the acute trusts in our area to align what we do with their work.

4.3 Patients in Control: Self-Management Support and Information Provision

The aim of this workstream is to provide patients with the advice, support and information they need to be more in control of their health, decision-making and MSK healthcare experience; also to ensure they have access to a wide range of ways to look after themselves and their conditions.

SMS in Rheumatoid Arthritis: The Patient Director has been overseeing work with the National Rheumatoid Arthritis Society (NRAS). This focuses on providing a suite of self-management support programmes to people with rheumatoid arthritis (RA) – a six-week programme for people living with established RA; a newly developed short programme for those with established RA; a short programme that has been piloted within the service for those new to RA.

SMS in the community: The Patient Director has also been working with the Fed (Centre for Independent Living). This focuses on providing ways into healthy activities in the community. Activities include developing two inter-active resource directories for people with MSK conditions about local activities and groups. A small team of community link specialists are working with patients to find out what works and gets in the way of people being more mobile and active in the community. The work is also helping to build local voluntary sector capacity.

SMS Strategy: The work with the Fed and NRAS will inform a strategy for SMS work across the Partnership that will be developed by Chloe Stewart, the new self-care lead (who will also lead on working with clinicians to embed SMS into our services). A more strategic approach is required that takes account of the disparate elements of SMS work currently being undertaken (e.g. in pain management, fibromyalgia, RA). The next Patient and Carer Forum will be focusing on this issue in more depth.

 Self-management information: The Patient Director will also be leading on how we provide information on self-management on the website. This aligns with the wider work on self-management (see previous section)

Service information: We have improved clinic and service information and developed an integrated appointment letter that brings together previous leaflets provided separately. This includes prompts for patients before and during the consultation, and user-friendly information about the service. Other information letters and leaflets are being re-designed to mirror the tone, structure and content of the integrated appointment letter. This information is also being made available on the website.

Clinical information: The Patient Director is in discussion with pathway leads about how we can develop more systematic ways to improve the quality of patient information we provide in clinic. The new website has sections for patient information and looking after yourself and is being populated by information agreed by clinicians. Any work needs to be aligned with other information work, such as on clinic outcome letters. The work on provision of information dovetails with that on improving shared decision-making. The Patient Director is working closely with the Clinical Leads for each MSK condition on this issue.

Information to the public: We need to do more to keep patients and the public up to date with changes to services. Much of this will be undertaken via updates on the website, but also needs to align with our wider communications strategy (e.g. GP Newsletter and Staff Bulletin).


If you liked this blog, check out the others here and find out more about the patient and public engagement work I do in other parts of the country here 

(c) David Gilbert 2016



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