Web 2.0 Enables Working with Patients as a Driver of Innovation in Research
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Abstract
Today, upwards of 80% of adults in the US and Western Europe are seeking health information on-line and using electronic tools to communicate and cope with their medical conditions. This rise of the “digital patient†provides opportunities for innovation that makes clinical research more efficient.
Feedback from over 200 patients in the US and UK suggests that the primary reason they do not participate in research activities is that they are unaware of study opportunities (~2/3 of respondents). Yet, our efforts in reaching out to patients suggest that on average, 72% are interested in clinical trial participation (Applied Clinical Trials, July 2012).
One commonly used technique for working with patients is to do outreach to make patients aware of study opportunities. Historically, this outreach was through traditional media (radio, print, tv), however in the last 5 years we have seen a shift to digital as the primary channel including on-line patient communities, social media, search engine marketing, and targeted banner advertising.
While many companies have adopted supplemental recruitment as a strategy for increasing study efficiency through more rapid enrollment, an expanding mix of direct-to-patient activities are increasingly being proven to achieve additional efficiencies. This session will focus on emerging activities such as patient protocol assessments; changing informed consent to facilitate long-term patient relationship (i.e., for lost to follow-up patients as well as post-study observational and/or safety data collection); and implementation of clinical trial alumni communities. The next frontier in this evolving set of patient-centric innovations for clinical research will be hybrid virtual trials where the schedule of assessments is critically analyzed to determine which activities can be delivered remotely.
Outside of clinical research, patients can also drive the collection of real-world data more quickly and cost-effectively post-launch. By linking patient-reported outcomes data to medical records, researchers can determine not only “what†has happened but also the “whyâ€. This “what†and “why†can then be leveraged by provider, payer, and regulatory stakeholders to improve patient outcomes both by understanding the comparative benefits and risks of treatment and by the development and delivery of tailored patient adherence programs.
The session speaker is the UK Partnering Director at Quintiles Digital Patient Unit which manages over 3.1 million patients through a series of on-line patient communities including MediGuard.org which has operations in the US, UK, France, Germany, Spain, Australia, and Brazil. Collectively, Quintiles Digital Patient Unit has conducted over 350 patient assessments to obtain feedback on clinical trial protocols and is considered an innovator in delivering direct-to-patient studies that include patient-reported outcomes as well as other elements including medical record access and genomic testing. Our first US direct-to-patient PRO+Medical Record study was published in JMIR in October 2012, and we are currently preparing for submission of what we believe is the first PRO+EHR study to be conducted in the UK in partnership with the SAIL Databank at Swansea University. Case examples for all of these research areas enabled by Web 2.0 will be provided during the session.
Feedback from over 200 patients in the US and UK suggests that the primary reason they do not participate in research activities is that they are unaware of study opportunities (~2/3 of respondents). Yet, our efforts in reaching out to patients suggest that on average, 72% are interested in clinical trial participation (Applied Clinical Trials, July 2012).
One commonly used technique for working with patients is to do outreach to make patients aware of study opportunities. Historically, this outreach was through traditional media (radio, print, tv), however in the last 5 years we have seen a shift to digital as the primary channel including on-line patient communities, social media, search engine marketing, and targeted banner advertising.
While many companies have adopted supplemental recruitment as a strategy for increasing study efficiency through more rapid enrollment, an expanding mix of direct-to-patient activities are increasingly being proven to achieve additional efficiencies. This session will focus on emerging activities such as patient protocol assessments; changing informed consent to facilitate long-term patient relationship (i.e., for lost to follow-up patients as well as post-study observational and/or safety data collection); and implementation of clinical trial alumni communities. The next frontier in this evolving set of patient-centric innovations for clinical research will be hybrid virtual trials where the schedule of assessments is critically analyzed to determine which activities can be delivered remotely.
Outside of clinical research, patients can also drive the collection of real-world data more quickly and cost-effectively post-launch. By linking patient-reported outcomes data to medical records, researchers can determine not only “what†has happened but also the “whyâ€. This “what†and “why†can then be leveraged by provider, payer, and regulatory stakeholders to improve patient outcomes both by understanding the comparative benefits and risks of treatment and by the development and delivery of tailored patient adherence programs.
The session speaker is the UK Partnering Director at Quintiles Digital Patient Unit which manages over 3.1 million patients through a series of on-line patient communities including MediGuard.org which has operations in the US, UK, France, Germany, Spain, Australia, and Brazil. Collectively, Quintiles Digital Patient Unit has conducted over 350 patient assessments to obtain feedback on clinical trial protocols and is considered an innovator in delivering direct-to-patient studies that include patient-reported outcomes as well as other elements including medical record access and genomic testing. Our first US direct-to-patient PRO+Medical Record study was published in JMIR in October 2012, and we are currently preparing for submission of what we believe is the first PRO+EHR study to be conducted in the UK in partnership with the SAIL Databank at Swansea University. Case examples for all of these research areas enabled by Web 2.0 will be provided during the session.
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