social media Archives - Page 3 of 4

The Kidney Cancer Support Community on Inspire
Patient communities

The Kidney Cancer Support Community on Inspire

The Kidney Cancer Support Community on Inspire By Kathleen Hoffman, PhD MSPH Of the over 1 million cancers diagnosed each year in the US, around 3 percent are kidney cancers.1 This relatively rare cancer is twice as likely to develop in men as women. Around 73,000 new cases will occur in the US in 2019, about 44,000 men and 29,000 women.2 Kidney Cancer Association Kidney Cancer Support Community on Inspire Started in 2014, the Kidney Cancer Association Kidney Cancer Support Community on Inspire has grown to approximately 2600 members; 64 percent are female, 36 percent male. [...]

Sep 2019By Kathleen Hoffman, PhD, MSPH|0 Comments

What’s the FDA up to on Patient Focused Drug Development (PFDD) these days?
Patient-focused drug development

What’s the FDA up to on Patient Focused Drug Development (PFDD) these days?

What’s the FDA up to on Patient-Focused Drug Development (PFDD) these days? By Kathleen Hoffman, PhD MSPH Part of the FDA’s mandate in implementing the “21st Century Cures Act” is ensuring the incorporation of patient experience data into drug development. They’ve hit the deadline for another Patient Focused Drug Development (PFDD) Guidance document, so let’s look at the status. Background The Agency is in the process of issuing four PFDD guidance documents to “address, in a stepwise manner, how stakeholders can collect and submit patient experience data” for medical product development and regulatory decision-making.1 Draft Guidance [...]

Sep 2019By Kathleen Hoffman, PhD, MSPH|0 Comments

Can We Have Your Attention, Please?
Patient engagement

Can We Have Your Attention, Please?

Can We Have Your Attention, Please? By Heather Holder and Odin Soevik Internet users have a lot of experience in ignoring online advertising. The term “banner blindness” appeared around 1998 to describe online users’ acquired ability to ignore most banner ads as irrelevant to them. That’s 21 years of practice. Presumably, as new forms of advertising are developed, audiences have only gotten better at recognizing ads, and, if average click-through rates are a measurement, overlooking them. The Role of Personal Relevance Human brains are designed to perform “selective filtering,” attending to what is immediately relevant and [...]

Sep 2019By Heather Holder|0 Comments

Join the Party…Sponsored Content / Native Advertising!
Patient engagement

Join the Party…Sponsored Content / Native Advertising!

Join the Party...Sponsored Content / Native Advertising! By Odin Soevik There are two ways to be invited to a party where someone is selling something. Either your host tells you, up front, that it’s a party where part of the event is sales-related, and hopes you’re interested. Or, there’s the kind where you thought you were being invited over for dinner but you find out, too late, that your host is selling you life insurance. When the latter happens, you may not know how you feel about your friend. It’s the same with native advertising. Sponsored [...]

Aug 2019By Odin Soevik|0 Comments

Buzzword Bingo and Sponsored Content/Native Advertising
Patient engagement

Buzzword Bingo and Sponsored Content/Native Advertising

Buzzword Bingo and Sponsored Content / Native Advertising By Odin Soevik “Buzzword bingo” is a game in which everyone in a meeting gets a one-page grid of today’s business buzzwords. Each time a person in the meeting says one of the words, you mark the box with that word in it. The first person to mark off a full line of buzzwords, wins. If you work in pharmaceutical marketing, your bingo card definitely has some form of the word “storytelling” on it, along with a set including authenticity, relationship, brand equity, eWOM, influencers, and the old [...]

Aug 2019By Odin Soevik|0 Comments

A Look Across Inspire’s Annual Surveys
Patient insights

A Look Across Inspire’s Annual Surveys

A Look Across Inspire’s Annual Surveys By Hannah Eccard Over the past four years, Inspire has conducted an annual survey of its members. Participation has been high, with an average of 10,000 members participating each year. This large pool of data over time provides a unique glimpse at the changes that have occurred in social media use in healthcare. The use of social media and mobile apps among patients and caregivers has changed dramatically over the past four years and Inspire’s annual survey data supports this. For example, in 2014, 70 percent of the over 13,000 respondents [...]

Mar 2019By Hannah Eccard|0 Comments

The real world online-Understanding and using patient-reported real world evidence from social media
Patient insights

The real world online-Understanding and using patient-reported real world evidence from social media

The real world online--Understanding and using patient-reported real world evidence from social media By Monica St Claire Next week, I will be presenting at the Patient Registries and Real World Evidence Summit in Miami. The focus of the conference is Real World Evidence (RWE) in drug development, FDA approval and payer reimbursement. Beginning with an overview of patient and caregiver activity on social media, my session will explore the use of content created by patients and caregivers on social media as RWE. From my experience as a sociolinguist and social media researcher, I’ve found that patients and [...]

Jan 2019By Monica St Claire|0 Comments

Social Listening to Understand the Unmet Needs of Patients
Patient insights

Social Listening to Understand the Unmet Needs of Patients

Social Listening to Understand the Unmet Needs of Patients By Marina Shayevich and Sara Ray Across healthcare, patients lament the imperfection of pharmaceutical treatment. Although grateful to have life saving and life improving medications, patients are often met with frustration at the limitations of their medications. Nowhere is that more evident than in rare diseases, where the rarity of the illness may lead to a scarcity of available, approved pharmaceutical treatment options. Many patients are left to turn to off-label medication use in the effort to get the best solution possible. Even then, these treatments do not [...]

Dec 2018By Marina Ness|0 Comments

Can social media help uncover insights about the patient journey?
Patient insights

Can social media help uncover insights about the patient journey?

Can social media help uncover insights about the patient journey? By Monica St Claire Does patients’ social media content truly reflect the real world experience of patients in general? Can it uncover insights about the patient journey? This question tends to come up when someone is new to this type of research. It’s a good question. Social media’s pervasive presence has been documented by Pew Research, among others, finding that Facebook is used by 74% of Americans on a daily basis, over half saying it is used more than once-a-day, and that 73% of Americans use multiple [...]

Oct 2018By Monica St Claire|0 Comments

Listen to People Impacted by Rare Disease
Patient insights, Patient stories

Listen to People Impacted by Rare Disease

Listen to People Impacted by Rare Disease By Kathleen D. Hoffman, PhD “The success (or failure) of the majority of rare disease drug development programmes rests on surrogate outcomes (e.g. laboratory measures, organ size) that may not reflect treatment benefits that patients value.”1 ~Morel and Canto Thomas Morel and Stefan Canto’s position paper from 2017 clearly describes the dilemma faced in rare disease research. Lab measures and organ size don’t speak to what patients with rare diseases experience, need or value. This focus on measures that are not meaningful impacts the development of rare disease treatments [...]

Oct 2018By Kathleen Hoffman, PhD|0 Comments