The 100,000 Genomes Project: ensuring the public and patient voice is heard

Our Public & Patient Involvement (PPI) Manager, Hildegard Dumper recently took part in a consultation event focusing on the issue of informed consent for people signing up to the 100,000 Genomes Project. She shares her thoughts and reflections…

Genomics England in conjunction with NHS England are running a series of consultations is running series of consultations around the country on changes being considered in order to make it easier for people agreeing to take part in the project. The aim is to do so without compromising the necessarily rigorous framework for informed consent.

There are currently 13 GMCs in the UK, including one in the West of England, working with Genomics England to deliver the 100,000 Genomes Project, which is the largest national sequencing project of its kind in the world.

100,000 genomes from NHS patients with rare diseases and cancer will be sequenced and analysed, to better understand the genetic causes of these diseases.

The West of England AHSN is one of the partners in the West of England Genomic Medicine Centre, leading on public and patient involvement (PPI). I was invited to join a consultation workshop in Taunton, hosted by the South West AHSN, along with Adele Webb, a public contributor on both our AHSN board and the West of England Genomic Medicine Centre’s board.

So on a sunny Friday morning, Adele and I met at Taunton train station to share a taxi to the Musgrove Hospital Academy. There we met up with the two researchers running the evaluation from Imperial College London, as well as three more public contributors from the South West.

Markella Boudioni, a researcher from NIHR Imperial Biomedical Research Centre, Patient Experience Research Centre and West London Genomic Medicine Centre explained the background to the evaluation, taking us through the issues and key questions they were trying to address.

A considerable amount of time was spent on the issue of patients receiving information about other conditions that might be discovered unexpectedly, whether and how we should invite people to opt in or out of that. This opened up a particularly thoughtful discussion about the huge impact on families of sharing the information that an inherited condition was present in the family and its implications for the future. We were able to bring to this our personal experiences.

It clearly is in Genomics England’s interest to understand this, as one way or another there are clear resource implications. The current paperwork is considerable but it is difficult to know how they might get around some of the questions around consent that need to be asked.

We were asked to review current patient information material, including consent forms for both cancer and rare disorders and opt in and out forms.  The discussion ranged over the style of written material for patients, how to mitigate the bulk of text and the use of plain and accessible language.

We also covered different methods of presenting information in order to be inclusive – offering alternatives to online access, for example. In considering recruitment, we looked at the key points in the patient pathway and how recruitment might be more effectively embedded in the process, together with different PR approaches to encourage take-up.

Markella was very skilful at pursuing clarification, channelling our thinking on key issues and in encouraging suggestions and improvements to the patient approach.

The focus group was clearly helping to inform the moves to improve the material being given out. It felt like a very practical and positive contribution towards the patient experience and pathway, especially when we were invited to propose and explore solutions.

Both Adele and I found it extremely useful to have been part of the consultation as it helped us understand some of the challenges faced by NHS England in rolling this out and gave us a deeper appreciation of some of the ethical dilemmas associated with the project.

Five things to consider before embarking on co-production

What does co-production actually mean in practice? asks Hildegard Dumper, the West of England AHSN’s Patient and Public Involvement Manager.

You might have noticed there are a number of buzz words currently flying around, the most common starting with the prefix ‘co’: co-produce, co-design and co-create. Even NHS England talks about co-design in its Five Year Forward View. I thought I would share with you my understanding about these ‘co’ words, and what they mean for us.

The first thing we need to understand is that all these ‘co’ words describe an approach to working with the public that regards each individual, regardless of their role, as having a valuable contribution to make. Central to this approach are principles of reciprocity and equality. We at the West of England AHSN have committed ourselves to being guided by these principles and working in a co-produced way.

There are a number of definitions of co-production. The National Co-production Critical Friends defines it as…

‘a relationship where professionals and citizens share power to plan and deliver support together, recognising that both have vital contributions to make in order to improve quality of life for people and communities.’

The New Economic Foundation / NESTA suggests co-production is…

‘delivering public services in an equal and reciprocal relationship between professionals, people using services, their families and their neighbours. Where activities are co-produced in this way, both services and neighbourhoods become far more effective agents of change.’

 NHS England’s Citizen’s Assembly describes co-production as…

‘service users, or the public in general, working in partnership with service providers or commissioners to jointly make decisions.’

So what does this actually mean for us in practice? There are a number of things that need to be considered when deciding to work in a co-produced way.

1. What’s in scope?

Decide which pieces of work are suitable for co-production and what can and cannot be achieved by involving people in this way.

2. Identify resources

Consider what resources you have available. Think about:

  • Staffing – who will be managing the project?
  • Funding – have you the resources to pay travel expenses and/or people’s time? See our guide to paying expenses.
  • Timing – involving people takes longer. What is your time-line?
  • Identifying suitable people – what kind of selection process would be fair and appropriate?

3. Produce role descriptions

Develop and agree with your public contributors a role description which clearly states the time commitment expected from them, the length of their involvement and payment details (a template role description is available).

4. Create a level playing field

Identify where power imbalances can exist and take steps to minimise them. For example, don’t have meetings at a time that excludes public contributors from attending or from taking part in the background thinking and development of a project.

5. Value difference

Work with a wide range of people, using different people for different pieces of work.

It has been shown that where genuine co-production has taken place, it can deliver better outcomes, support better use of scarce resources and improve the well-being of those involved – clearly a win/win situation for the West of England AHSN.

Effective patient and public involvement takes time

Developing effective patient and public involvement (PPI) takes time and commitment, says the West of England AHSN’s Patient and Public Involvement Manager, Hildegard Dumper.

Two events in the last week have reminded me that the development of good public involvement takes time.

At a panel discussion on cities, health, people and leadership at the Festival of the Future City last week, Professor David Evans pointed out that NIHR INVOLVE is now 20 years old. INVOLVE was set up by the National Institute for Health Research (NIHR) to support public involvement in the NHS, public health and social care research. It is now well established as the key body to drive forward and support good practice in public involvement in research, providing the benchmark for other areas of health and social care.

In the context of an NHS that has gone through several major structural changes in the past few years, this consistency is a major achievement.

I was reminded again how the development of a truly patient and people led health service takes time at the People in Health West of England Awayday this week. During an exercise reflecting on our achievements over the past year, we realised that the idea for a joint PPI initiative was first mooted in 2008, seven years ago. This evolved first into People & Research West of England, before being re-launched as People in Health West of England (PHWE) in 2014.

Throughout this time the network has been chaired by Nicky Williams, Deputy Director of Research, North Bristol NHS Trust. Nicky is now leaving us to take on the post of National Director of Support & Delivery for Health And Social Care Research for Wales.

Nicky told me: “It has been a pleasure to co-chair the strategy group with Cathy Rice over the last few years and I look forward to hearing all about the work of PHWE in the future. I’m really proud of how PHWE has grown from the little seed of an idea that we first discussed in 2008 – a real credit to the commitment of the public contributors and staff involved.”

How can citizens lead the health system of the future?

Hildegard Dumper, Patient and Public Involvement Manager for the West of England AHSN and People in Health West of England, asks how citizens can play their part in shaping and leading the health system of the future. Hildegard will be chairing a session on 17 November at Bristol’s Watershed on ‘Cities, Health, People and Leadership’, as part of the health strand of Festival of the Future City.

The discussion on 17 November will be debating whether the citizens of the future need to be more engaged in shaping the world they live in – the services they receive, the systems and structures that make it possible to live the quality of lives we lead.

The question is whether the current models of leadership enable this to happen or do cities need to be led differently in the future to encourage engagement?

The NHS Five Year Forward Plan has described a vision of the NHS as a social movement. This relies on each and every individual playing their part and taking responsibility for the success of the NHS as active citizens.

However the challenges are great. The health sector has a very hierarchical structure with a very top-down approach to leadership. Within it is a culture of working where the people at the top of the hierarchy drive forward decisions, often with little consultation with the people around them. Working collaboratively is still a new approach, with many staff not having the skills or experience to work in this way.

The evidence suggests that the current model of leadership is not effective and does not make it possible for the full diversity of society to be involved. Take for example the failure to engage women in leadership positions in the NHS structures – 80% of staff in the NHS are women, whilst just 40% of chief executives are women and 20% of medical directors (source: HSJ). This arguably indicates that the leadership models within the NHS are not ones that women feel comfortable with. Others are likely to feel the same.

So what kind of leadership is needed? How can the public support the vision as set out in the Five Year Plan?

One way to change the culture of working within the NHS is to encourage more people to understand how the NHS works and contribute in a constructive and positive way.

We in the West of England AHSN are building up a pool of trained and skilled people to work alongside us to help design and steer our work. These people have the potential to become ambassadors to health staff and the wider community, the friends and family around them. Our emphasis is less on individuals in leadership positions, but more about having a pool of people with a range of experiences and perspectives that work with us to improve NHS services.

I am looking forward to the event on 17 November and hearing from others in the panel and in the audience about what models they think we should be adopting.

More information about the Cities, Health, People and Leadership event is available on the Bristol Health Partners website.

Hildegard is developing a model of involving the public that recognises and affirms the different skills and attributes people can bring to health improvement. She is also working closely with colleagues in the West of England AHSN to support health professionals push through the cultural changes needed for closer partnership working with patients and the public.