Article:   Patient Engagement & Diversity

The  past couple of years have brought continued change, driven by the ongoing pandemic, as healthcare systems around the world continue to assess how they interact and engage with patients and wider communities.

In our previous article we discussed the challenges in Patient Engagement during the COVID-19 Pandemic,  focusing on patient outreach through digital channels as well as the importance of  capturing minority patient voices.

Digital services

It appears that digital services and systems are   here to stay – during the height of the pandemic and lockdowns, we saw the increased use of digital systems for patients accessing primary and secondary care services. Whilst convenient for most, this was a barrier and had a negative effect for patients with more acute conditions such as cancer, impacting diagnosis, treatment, and management1.  With services now operating on a hybrid basis, patients are beginning to be seen in person, albeit at a much slower rate compared to pre-pandemic levels2.

Pharmaceutical companies had to rapidly adapt their systems and engagement methods to deal with the lack of face-to-face opportunities. Many Field Medical and Sales teams switched to online platforms to engage with HCPs to maintain relationships and provide continued support.

Ongoing use of digital services and devices will play an important role in patient engagement – understanding how and why certain groups use technologies, channels, online services, and platforms will be key to maintain and improve engagement.

What does this mean for market research and insights? The increased use of mobile devices & services for both patients and HCPs does allow for better access to these groups, both locally and globally, and increases the ability to use novel methodologies such as ethnography and phenomenology which can utilise technology to better understand a patient’s lived experience.

Effective engagement starts with the empowerment of patients and their HCPs through the provision of education, training, & tools.”

The reach of healthcare services and telemedicine especially has its limits. In many major markets there was relatively poor uptake of the Covid-19 vaccine – hesitancy was especially concentrated amongst ethnic minority groups and those from low socio-economic backgrounds. Whilst these groups might have access to devices capable of accessing telehealth services and digital health information, barriers were and still are in place e.g. access to education, literacy, cultural differences, English-language only services and an overall lack of trust with public sector officials and services.  In the UK, we also saw the black and minority ethnic community being disproportionately affected by the pandemic which in part may have contributed to poor vaccine uptake.4

Effective engagement starts with trust and the empowerment of patients and their HCPs through the provision of education, training, and tools. To understand the unmet needs of patients and HCPs, they need to be heard and  have a fair share of voice – without this, pharmaceutical companies, HTA’s etc. risk making assumptions and missing out on a wider patient perspective when developing and approving new therapies and medical devices.

How do we effectively engage with diverse patient groups without alienating them? As researchers, we speak to a variety of people – these range from HCPs to patients and caregivers. For rare indications it’s often challenging to locate patients who are fit and able to take part in market research. It’s sort of a catch-22 – pharmaceutical companies and most recently HTAs are demanding insights from relevant patients to develop market strategies and provide approval, but when the indication is rare, there are often barriers and limitations to patient recruitment for market researchers. Together with local fieldwork partners, we’re often able to reach hard to find patients, employing recruitment strategies that utilise the power of social media and partnerships with patient association groups (PAGs).

Patients & clinical trials

It’s a similar story for randomised control trials (RCTs) – there are comparable challenges with patient engagement, recruitment and retention. Clinical and R&D teams could greatly benefit from patient and HCP insight before protocol development – collecting insights would help tailor the trial to better suit the needs of a patient. A clinical trial investigating a new therapy for patients with COPD might require patients to travel to a central site for monitoring and tests – for patients with moderate/severe disease this requirement might be impractical. These patients often struggle to get out of bed in the morning, let alone travel to a site that might be some distance from their home. Speaking to patients would allow them to provide feedback on a proposed trial schedule, providing the clinical team with insights they can use to  tailor the trial to the patient rather than the patient have to fit the trial.

Decentralised clinical trials overcome some of the challenges that traditional RCTs face. They utilise telemedicine and mobile/local healthcare providers, employing processes and technologies that differentiate them from the traditional clinical trial model5.  This means that COPD patient who would have otherwise been unable to participate in a clinical trial previously could be visited at home or be managed virtually.

Insights gathered during a clinical trial would also help refine and inform

the trial as well as any planned further development phases. Data could not only be collected from patients, but also from sites, principal investigators, research nurses, and other stakeholders. Insights would inform clinical trial operation and refine processes that could improve patient recruitment and retention.

Conclusion

There is no one-size-fits-all approach to patient engagement  it’s incredibly nuanced and multifactorial, with cultural differences, language barriers, education, literacy, and technological uptake all needing to be taken into consideration. However, the benefits of  including patient insights from across the product lifecycle are a win-win scenario for all stakeholders – allowing pharma to refine their clinical trials and giving patients a voice in the treatment and management of their condition. An activated and engaged patient is more likely to have a more positive effect on their care and health outcomes. Data-driven insights also enables health providers and organisations to anticipate patient needs and build enduring connections between

patients and health care providers.

7i Group Ltd provides leading-edge research to help inform strategy across the product lifecycle. We work with a wide range of pharmaceutical teams, from R&D, clinical to medical and commercial to provide insights from stakeholders, including patients, caregivers, HCPs and payers. To find out more about how we can assist with your research needs contact arun.ghale@7i-group.com

References

1  Lai AG, Pasea L, Banerjee A, et al Estimated impact of the COVID-19 pandemic on cancer services and excess 1-year mortality in people with cancer and multimorbidity: near real-time data on cancer care, cancer deaths and a population-based cohort study BMJ Open 2020;10:e043828. doi: 10.1136/bmjopen-2020-043828 https://bmjopen.bmj.com/content/10/11/e043828

2  How have GP practices adapted to the COVID-19 pandemic? NIHR [Online] https://arc-w.nihr.ac.uk/research/projects/collecting-rapid-covid-19-intelligence-to-improve-primary-care-response/

3  Lack of trust in public figures linked to COVID vaccine hesitancy says new research(2020)  University of Birmingham [Online] https://www.birmingham.ac.uk/news/2022/lack-of-trust-in-public-figures-linked-to-covid-vaccine-hesitancy-says-new-
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vaccine%20hesitancy,and%2For%20ethnic%20minority%20backgrounds
.

4  Ethnicity and COVID-19 (2021) UK Research and Innovation [Online] https://www.ukri.org/news-and-events/tackling-the-impact-of-covid-19/understanding-coronavirus-covid-19-and-epidemics/covid-19-and-ethnicity/

5  CTTI Recommendations:Decentralised Clinical Trials (2018) Clinical Trial Transformation Initiative, CTTI [Online] CTTI Recommendations: Decentralized Clinical Trials (ctti-clinicaltrials.org)

Author

Arun Ghale
Arun GhaleAssociate Research Director
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