Observing Patients Online: The Changing Face of Research -

Published: September 2011 | 47 pgs 

For years, patients have shouted to be heard. But as online patient communities, chat rooms and forums have gained popularity—and political clout—their voices are resonating.  

Now being used to paint real-world pictures of patient drug use, data from online patient communities can no longer be ignored or dismissed. "The history of medicine is that in many respects patients have been left out of the conversation," says Brian Loew, president of inspire.com. "I think patient communities are a real opportunity to fix that."  

Already, data from online patient communities are being used to deepen understanding of the patient journey through illness, thus improving compliance, informing patient-centred endpoints for clinical trials and influencing reimbursement decisions. Such pools of patients are also being deployed to conduct direct-to-patient clinical research, where patients are recruited and monitored online, thus eliminating the need for clinical sites and investigators. In the face of payer skepticism, however, the question is how fast will it scale up?  

Report Overview: 

In Observing Patients Online: The Changing Face of Research, FirstWord investigates the role online patient communities can play in observational research to enhance knowledge of how drugs are taken in the real world. Based on expert interviews, research and studies, the report examines how the means to recruit patients online and track their experience via patient-reported outcome questionnaires and sensors in real-time has the potential to transform how observational studies are conducted.  

Key Features: 

Who takes the lead in commissioning observational research
Typical studies being commissioned online
How healthcare tracking is going mainstream
Case study of UCB's partnership with PatientsLikeMe
Benefits of crowdsourcing: is it the new serendipity?
The drivers of online observational research

Key Benefits: 

Overview of how online patient communities are transforming observational research
Access to expert opinion from key leaders in the industry
Discussion of conventional versus direct-to-patient trials

Key Questions Asked:

What role do online patient forums have to play in observational research? How is pharma research using patient communities?
What position do payers take?
How can data mined from online sources increase the authenticity of a drug's value?
What role, if any, does self-tracking have in observational research?

Who Should Read This Report: 

E-business/Emerging Technology Directors
Clinical Research and Trials Directors
Heads of Communications/PR
Market Access Directors/Managers
Marketing Research/Business Intelligence Managers

Expert Views Include: 

Alan Bennett, counsel, Medical Information Working Group
Brian Loew, President, Inspire.com
Keiron Sparrowhawk, Partner, PriceSpective
Sue Curron, Vice President and Senior Global Project Leader, Patient Solutions, UCB
Elisa Cascade, MediGuard
Jeremy Shane, President, HealthCentral.com
April Foreman, Psychiatrist
Ben Heywood, Co-founder and President, Patientslikeme.com
Paul Wicks, R&D Director, Patientslikeme.com

Key Quotes: 

"We see a shift wherein patients are not just taking part in their care, but defining it. Patients make decisions about managing their disease, defining their quality of life and deciding how their dollars are spent."
–Brian Loew, President of inspire.com

"The challenge for the pharma industry is to identify the most effective means of communicating patients' perception of treatment benefits to the different stakeholders in a changing technological climate."
– Mike Baldwin, Health Outcomes Manager at Novartis, UK

"At present, around 99 percent of all trials are still recruited via clinician sites. The idea of doing research directly with patients is definitely an emerging innovation. It has been piloted and now the question is how fast it will scale."
– Elisa Cascade, Vice President of Mediguard


Executive summary
> Hierarchies of evidence
> Changing technological climate

An interconnected world 
> Recruitment online
> Double-edged nature of engagement

Patient registries 
> Product registries
> Disease or condition registries
> Strengths and weaknesses
> Commercial registries
> Ethical considerations
> Commissioning online observational research
> Departments involved
> Projects commissioned

Patient-reported outcome measures 
> Greater regulatory acceptance
> More talk than action
> Tracking healthcare
> Tracking takes off in the UK
> Blood pressure guidelines revised
> New kinds of research
> PROMs via text
> More efficient healthcare delivery
> Better compliance
> Growing self-tracking community
> Tracking for public health
> Changes in asthma management
> Data donorship

Online patient communities 
> More than 'a pool of glimpses'
> Lithium for ALS study
> Mutually beneficial research
> Crowdsourcing
> Informing Phase III
> UCB's partnership with PatientsLikeMe
> Are patients competent to report?
> Patient-driven PROMs
> Drivers of online observational studies