Patient engagement in medical technology policy making

The Patients Association and Coloplast UK worked together to conduct a comprehensive project aimed at enhancing patient and carer engagement in policy making and the assessment of medical technologies for intimate healthcare, and better understand how patients and carers in this area of health define quality, innovation, quality of life and value.

The plan involved a combination of roundtable meetings, case study interviews with patients and carers, a survey of third-sector organisations representing patients, and extensive desk-based research.

Decision-making

The findings from this project shed light on the existing challenges in patient and carer engagement. The predominant ‘patient involvement’ approach often marginalises patients and carers, granting them unequal status as partners in decision-making processes.

While patients occasionally contribute to assessments, particularly in aspects like design and features of medical devices, their involvement in policy making remains limited. Despite this, patients and carers expressed a strong desire to actively participate in these activities, emphasising the unique perspective they bring due to the distinct nature of intimate healthcare needs.

Recommendations

To address these issues, the report makes five key recommendations:

Improve the engagement process

Designate seats for patient and carer participation on policy making and assessment bodies
Enhance engagement of patients with relevant lived experience in decision-making bodies
Establish a centralised resource for patients to access information about engagement opportunities.

Improve the recruitment process

Use proactive and non-traditional recruitment strategies, involving third-sector organisations
Leverage NHS clinic sites and clinicians for promoting and educating patients and carers
Expand recruitment efforts to reach individuals from 'seldom heard communities'.

Build the evidence-base

Fund studies co-designed with patients and third-sector organisations to identify patient-centric metrics
Conduct research on effective patient engagement strategies and their influence on decision-making
Ongoing evaluation of new approaches to ensure sustained patient and carer input.

Enhance integration of patient metrics

Understand the impact of medical devices on patients' quality of life
Engage with patients and carers to define 'quality', 'value', 'innovation', and 'quality-of-life'
Emphasise transparency in weighing patient and carer input against other stakeholders.

Support a care continuum

Focus on a holistic care approach, combining access to quality medical devices with high-quality clinical pathways and services
Ensure timely access to quality services through well-designed and resourced clinical care pathways for intimate healthcare patients and their carers.

These recommendations aim to reshape the engagement landscape, prioritising the inclusion of patients and carers in decision-making processes related to medical technologies for intimate healthcare.

Read the full report, Improving patient and carer engagement in policymaking and assessment of medical technologies for intimate healthcare.

Acknowledgments

The Patients Association and Coloplast UK would like to thank and acknowledge the patients, carers, and other stakeholders who participated in the roundtable and case study interviews. We thank them for graciously sharing their time, personal experiences, and insights to help ensure that the patient voice is a critical voice in driving decision-making regarding medical technologies for intimate healthcare.

We would also like to thank the third-sector organisations who helped to promote this project to their membership as part of our patient recruitment.

Finally, we would like to thank the third-sector organisations who provided their input and feedback to our survey: Colostomy UK, The Multiple Sclerosis Trust, and The Urostomy Association.

How you can support the findings of this report:

Use the social media buttons below to share the report and it's recommendations.
Read our six principles of patient partnership.
Keep up to date with our work on shared decision making and opportunities to participate in research projects by joining the Patients Association – it’s free and easy to join. Follow this link to learn about the benefits of membership.

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