Engaging with the patient voice: Digital health innovation (Health Tech Alliance Member Meeting, 25 June 2024)

Summary

The role of patients in the design and assessment of products is increasingly becoming important for product approval. At the June Health Tech Alliance member Meeting, Clive Flashman and Rachel Power presented on engaging patients in digital health innovation. Below is a summary of their presentation and Q&As after.

Content

Rachel Power, Chief Executive Officer of the Patients Association. The Patients Association is an independent patient charity which campaigns for changes in health and social care on behalf of patients.

There are six principles of patient partnership:

• Treating patients as equals.
• Patients who are fully informed by the services and systems they use.
• Shared decision making and patient partnership. If we get patient partnership right, we know that outcomes will be better for patients and staff, the system will be safer, and the design and delivery of systems for HealthTech developers will be more cost effective.
• Recognising inequalities.
• Seeking patient input.
• Joining services around patients.

How HealthTech developers should engage with patients:

• Working with patient groups—not just about bringing patients to the table but making sure that you’re recruiting for a really diverse group of patients and looking after them at every stage of the process.
• Making projects in HealthTech more accessible to patients—for example, explaining terms in a way that is accessible and understandable to patients.

Examples of ongoing and previous work include:

• Bristol Myers Squibb (ongoing)—to help understand how people living with cancers and blood disorders face barriers to care, with the aim to make improvements through the health system.
• The Digital Coalition—learning from the use of technology in healthcare before and during the pandemic.
• Roche Diagnostics—looking into patients' experience of diagnostics testing through a large survey, using feedback from patients to formulate recommendations.
• Coloplast—exploring ways to better engage patients and carers in policymaking and product assessment.

Events will be run throughout Patient Partnership Week from 2-6 September 2024. See the Patients Association's website for more details.

Clive Flashman is Chief Digital Officer at Patient Safety Learning. Patient Safety Learning is an independent charity that promotes the voice of patients and looks at how health and care professionals can improve patient safety.

What patient groups should HealthTech and healthcare organisations engage with?

• By speciality—related to specific conditions.
• By demographic—age, ethnicity, gender etc.
• Formalised groups e.g., Healthwatch and other ‘expert groups’.
• Commercial providers.
• Digital expertise—those with experience of using digital technologies.
• Previously formed groups.

For many digital HealthTech companies, there is insufficient engagement with target audiences. Building products in isolation without input means that there is no guarantee that the target audience will want to use that product.

Patient engagement should begin at the very earliest point. Developers should ensure that products address a real market problem and should seek help in piloting the solution.

What are the current expectations from the UK healthcare market with regards to patient involvement?

• NHSE & NICE consultation—this joint consultation outlines a new route for MedTech developers to access NHS funding, and patient involvement in this process is highly likely.
• MHRA have required patient involvement for all new drug approvals for over a year now. Regulations regarding patient involvement in MedTech are under consultation.
• NICE have introduced an Evidence Standards Framework, many of which address patient involvement in particular.
• DTAC-Standard1.1 onwards asks about user engagement in the development of the product. If you cannot give satisfactory answers, the NHS will not purchase your solution.

What are the biggest problems in engaging patients in digital innovation?

• Finding the right patients at the right time.
• Recognising reimbursement—typically not standard practice to reimburse patients.
• Ensuring that patients are engaged correctly, using their knowledge and capturing their feedback.
• Active facilitation—it is worth investing in a good facilitator to derive maximum value from patient involvement.

Top tips for digital health innovators include:

• Start with the problem, not the solution.
• If your solution is patient-facing, consider how it will be used and the diversity of potential users.
• Take patient safety seriously, have a designated team member who understands the potential risks to patients.
• Co-design and co-produce products with patients and the public.

Questions and answers

Q: Please can you clarify the rules around patient reimbursement and those receiving benefits?

A: Companies need to be careful, and could reimburse patients with vouchers as a benefit in kind.

Q: What are the rules around clinicians being used as a proxy for patients? Can clinicians help source patients?

A: Unsure why clinicians should be used in place of patients. The principle of shared decision-making means that patients should be involved, as it is their lives that are ultimately impacted. It is possible to go through clinicians for patient referrals, and that is how a lot of vendors get access to their patients in the first place.

Q: Healthcare is different from all other digitalised sectors. How do we help transition the population from face to face towards digital?

A: Trust and transparency from the very beginning will help. It is a challenge not just for organisations but for users. Organisations should ensure that they can offer faster access to services in the first instance, as this will help gain the trust of users and help the transition.