COUCH Health Roundup: Patients as Partners US 2020

In late August 2020, we were delighted to be a sponsor at Patients as Partners US 2020. It’s always great to catch up and network with people who share our passions in patient engagement and hear about the latest developments within the industry.


We’ve put together our highlights from the conference below.


Clinical Trial Experiences as a Cystic Fibrosis Patient & Insights on Trial Disruptions from COVID-19

Ronnie Sharpe Patient Advocate & Cofounder/CSO, Savvy Cooperative


In the first session of the conference, we heard from Ronnie Sharpe about his experiences of taking part in cystic fibrosis clinical trials. Ronnie shared that he has participated in a clinical trial every year for the past decade, and has been on four or five different treatments in that time.


When the US went into lockdown due to COVID-19, Ronnie’s in-person clinical trial visits were stopped immediately. These were previously at least once a month. Ronnie was never asked or consulted about how the transition would be made from on-site appointments to virtual trials, but several changes were introduced:


  • Blood draws could take place at a local lab or a nurse could do at home visits

  • Medication was delivered to his home

  • Weighing scales were posted to his home to collect this data remotely


Ronnie felt that while it’s often more practical to decentralise (with or without a pandemic), patients would miss the personal touch of in-person appointments and some assessments simply cannot be done remotely. He stressed the importance of the choice lying with the patient when trying to find a balance between decentralisation and on-site visits. In line with this, patients should truly be made partners who share ideas and bring value.


Diversity needs to be made a priority within patient engagement

Ash Rishi



Here, we heard from our very own Ash Rishi, who highlighted the current issues surrounding diversity in clinical trials. We’ve repeatedly discussed that ethnic minorities, women, the elderly and other groups are underrepresented in clinical trials. But why is this the case? Well, our research shows that:


  • The primary barrier for most people is a lack of awareness and understanding of clinical trials

  • Cultural and religious barriers are unique to ethnic minorities

  • People of Black and Asian backgrounds are fearful of exploitation, oppression and harm

  • Those with more traditional values (usually older generations) are more likely to have barriers to participation


Overcoming these barriers and successfully improving diversity in recruitment is more likely to be successful if framed as a community effort. This gives people a sense of belonging and empowerment, and is a vital step in rebuilding trust.


The Patient View: Biogen/Eisai Alzheimer’s Trial Participant Jeff Borghoff's Insights into His Experience in this Trial

Jeff Borghoff

Patient Advocate


After a misdiagnosis partly based on his younger age (51), Jeff was diagnosed with Alzheimer’s disease after about 18 months of testing. He heard about a local clinical trial centre through his neighbour and was able to join a trial. He was on a trial for 36 months and described feeling fantastic throughout, and noticed an improvement in his cognition. He therefore thought he was on the treatment arm and that the study drug was effective. In March 2019, a futility study revealed that the trial would not meet its primary endpoint, and it was stopped. This was devastating for Jeff and his caregiver. Not only the trial ending, but finding out from an online news source rather than being told directly. In October, he saw in the news that the trial drug was being submitted for FDA approval, and was able to start the treatment again in March this year as part of the EMBARK trial.


This story highlights a really important issue in clinical trials: communication with patients and caregivers is still not good enough. Plus, it raises the question of the primary endpoints being used in studies. The industry’s perspective on primary endpoints isn’t always necessarily what the patients consider to be important, so more needs to be done to prioritise outcomes that are valuable to patients.


New Data on Patient Preferences and Experiences to Inform Patient Engagement Strategies and Tactics

Ken Getz, MBA Director and Associate Professor, Tufts CSDD; Founder and Board Chair, CISCRP


Did you know that although public awareness of clinical trials seems to have grown throughout the pandemic, perceptions are increasingly negative? This shows there’s still a long way to go in building the public’s confidence and trust in clinical trials.

Research shows that the number of people who deem clinical trials as somewhat or very safe has decreased from 89% in 2019, to 71% in 2020. And willingness to participate has decreased from a majority of 85%, to just 49%.


New and targeted strategies and tactics are needed to help overcome this shift in attitudes. It’s clear that there also needs to be rededicated focus and energy to address the lack of diversity in clinical trials, particularly those for COVID-19 treatments or vaccines, as health disparities have already been observed for different groups. Opportunities for comprehensive, targeted planning and execution include:


  • Improving clinical research awareness and literacy

  • Workforce development and diversification

  • Protocol planning and design

  • Regulatory body roles in promoting diversity


Improving Access to Clinical Research in a Changing World

Rosamund Round Vice President, Patient Innovation Center, Parexel


Paraxel’s Patient Advisory Council have provided key insights during the pandemic. The patients involved have highlighted numerous areas as being important in the context of COVID-19:

  • Understand what safety measures are in place at clinical trial sites

  • Receive emotional support as needed

  • Provide home-based trial participation options

  • Enhance communication between patients and site staff


With diversity being increasingly at the forefront of everyone’s minds, patients also highlighted areas that can positively impact change:

  • Improve diversity in patient advocacy groups

  • Work with diverse communities to raise clinical trial awareness

  • Enhance site staff understanding of treatment decision-making roles

  • Upgrade patient education tools (consider literacy, health literacy and translations)

  • Reduce practical barriers to ongoing participation


This is definitely a step in the direction, and we hope to see other companies following suit and gaining insights from patients. Mostly importantly, we really hope insights such as these are truly taken on board and used to implement positive changes.


Key themes

We’ve given you a rundown of a few key sessions from the conference, but across the 3 days, there were also some important themes that were continually discussed.


Making patients true partners

As an industry, we can’t truly be patient centric without making patients partners. The involvement of patients and caregivers should be as widespread as possible and not just about feedback forms. Collaborations, co-creation and the opportunity to share insights and ideas need to occur at all stages of drug development.


The rise of telehealth – giving patients a choice

With the pandemic catalysing a shift towards remote healthcare and digital tools, there is a huge risk of making assumptions about what patients want. While some patients may be happy to go solely remote with any healthcare they can, some may prefer a mix, and some may want to continue with face-to-face interactions as much as possible. Patients need to be given options and be empowered to make decisions about how they receive care or participate in clinical trials.


Communication is always key

We heard some powerful stories from patients during the conference, and aspects that really resonated with the audience were how poor communication still is with regards to clinical trials. Patients are the absolute core of clinical trials and yet they still aren’t treated like it. Information and updates about clinical trials that patients are participating in need to be relayed in a timely and appropriate way. Importantly, this communication and engagement shouldn’t stop if a clinical trial is suspended, delayed or slowed.


Making the most of real-world data

Real-world data is presenting more and more uses within the pharmaceutical industry. We were interested to hear discussions about how real-world data can be used to create synthetic control arms in clinical trials. These remove the risk of patients being on the placebo arm, so patients would know they’ll receive the study treatment and potentially receive benefit, making them more likely to want to take part. Synthetic arms can make it easier to meet recruitment targets too, because patients are only needed for the study drug arm. It will be interesting to see if these are used more in the future.


Diversity: finally taking centre stage

We were pleased to hear the lack of diversity in trials being repeatedly mentioned throughout different sessions. These conversations are finally at the forefront of the industry and we hope this will result in major change. Although it may take a long time to rebuild trust with ethnic communities, action needs to start now to raise awareness and understanding of clinical trials. Community outreach will be a vital element of this, including engaging with patients to understand how they currently feel about clinical trials.


Collectively, we all need to change the dialogue, but this needs to start with having a deep understanding of the barriers these groups face when it comes to engaging with healthcare and research.



We thoroughly enjoyed the discussions that took place at this year’s Patients as Partners US conference. Of course, there is still much work to be done, and the conference highlighted that. But it’s promising to see that the right conversations are happening, which can ultimately drive improvements across our industry. Here at COUCH Health, we’re all passionate about driving change forward when it comes to truly making patients partners and improving diversity in clinical trials. Get in touch if you want to find out more.


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