Background

In 2018 the Patients Association wanted to better understand the views of patients and their information and support needs if impacted by the recent decision by NHS England to promote biosimilar medications. We gathered patients’ views through a national survey and a focus group in Birmingham. We asked whether people received the support they should expect when moving from biological to biosimilar medications. We wanted to find out if good practice guidelines were being followed in terms of patient-centred care, namely that patients are well informed and fully involved in shared decision making about the best treatment for their specific condition. We also heard from other national patient groups that have consulted on this topic

A summary of the findings and a full copy of the Patients Association report can be found here:

https://www.patients-association.org.uk/blog/understanding-patient-needs-switching-to-biosimilar-medicines

What was clear from the work we carried out was there was still a lot of uncertainty for patients about the impact of changing to biosimilar medications. There was a lack of good quality information and advice for patients, and very little shared decision-making or collaborative working between patients and clinicians.

From the concerns raised, and the suggestions from patients, the Patients Association decided it would be helpful in 2019 to produce a set of educational and support tools and resources, to assist patients in making informed choices, and with shared decision making, when discussing changing to biosimilar medications. The resources will also help healthcare staff and staff who commission healthcare services in their discussions around options for patients. The aim would be to better inform and empower patients to take control of their situation and be more equal partners in their treatment plan and choice of medication. This supports patients’ rights and responsibilities as outlined in the NHS Constitution and the NHS England Good Practice Principles. 

This will be a co-produced project, engaging both patients and relevant professionals.    

What will the co-produced project achieve?

The project will result in a set of tools and resources to help different types of patients who require biological or biosimilar medications to be better equipped to make decisions in order to influence their own health and wellbeing. The final tools and resources will depend on the work of a co-production working group. They will be available to patients, NHS and pharmacy staff as well as staff who commission healthcare, through a number of routes, including the Patients Association website and social media. There will be hard copies and different formats available for people with specific needs. Patient-friendly access to, and effective uptake of the resources will be key priorities for the project.

The tools and resources will have many benefits, including:

  • Empowered patients - knowing what questions to ask, able to make informed decisions and play an active role in their care and treatment
  • Patients knowing how to find out about their rights, responsibilities and health conditions, and how to maintain optimum health
  • Staff having a better understanding about what co-production and shared decision-making means in practice, and knowing where to find support to do this
  • NHS and pharmacy staff better able to support patients with shared decision-making

 How will the co-production process work?

  • The Patients Association will use feedback from the 2018 survey and focus group to highlight what patients wanted to see
  • The Patients Association will find out what information is already available to patients and identify any gaps in provision, or awareness of the information
  • A co-production working group of at least 15 people (10 patients and 5 professionals) will present ideas, then design and test a range of tools and resources in a process where patients and professionals work together as equal partners at every stage of the project, including peer evaluation
  • Clinicians, pharmacists and other key professionals will be involved in the development of this work, to help ensure that the tools and resources will be useful for NHS and pharmacy staff. They need to understand patients’ needs in relation to shared decision making regarding their medication

 Expected timescales

  • May 2019 Initial research.
  • June to August Engage with patients and professionals. Recruit co-production working group.
  • September First co-production workshop, in Leeds, to decide on tools and resources.
  • September/ October Produce draft tools and resources.
  • October Second co-production workshop, in Leeds to test and refine draft resources.
  • October/ November Refine and produce final tools.
  • November Publish and launch final tools and resources through the Patients Association.
  • December Parliamentary launch* and peer evaluation of the process.
  • 2020 Independent evaluation* of the value and uptake of the tools and resources for patients and staff. *Parliamentary launch and independent evaluation will be phase 4 of the project and subject to securing additional funding

This Patients Association project is supported through a sponsorship from Novo Nordisk and Amgen, and an unrestricted educational grant from Sanofi. No companies have had any influence on the content of the project.   

For more information on the project and how to get involved, please contact:

[email protected]  (for interested professionals)

[email protected]  (for interested patients)