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Haemophilia awareness: building trusted relationships between patients and industry

Haemophilia is a lifelong genetic disorder characterised by excessive bleeding.(1) Despite the existence of treatments for haemophilia, the condition continues to have major impacts on quality of life, for example in the areas of pain (acute and chronic), joint mobility, and physical function.(1) To mark World Haemophilia Day on 17 April, Prime Patient partnered with sister agency HCD Economics, a consultancy specialising in haemophilia patient research, and haemophilia advocate Laurence Woollard to better understand the existing relationship between patients and industry and how meaningful improvements can be made to the lives of people living with haemophilia (PwH).

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Prime GlobalHaemophilia awareness: building trusted relationships between patients and industry
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Patient engagement in rare mutation cancers

Patient advocacy and engagement are important no matter the disease area, whether it’s a common condition or one that few have heard of. Following the recent celebration of Rare Disease Day, let’s take a closer look at patient engagement in rare mutation cancers. 

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Prime GlobalPatient engagement in rare mutation cancers
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Amplifying the Patient Voice in Rare Diseases

Medical publishing is evolving beyond plain language summaries to provide insightful, patient-centred resources to change the course of pharmaceutical research for the better. For patients with rare diseases especially, this could be just what the doctor ordered, writes Olivia Kersey, Patient Engagement Strategist with Prime Patient.

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Prime GlobalAmplifying the Patient Voice in Rare Diseases
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Rare reflections: has the pandemic helped or hindered patient engagement and research for rare diseases?

Emma Sutcliffe, SVP Patient Insights and Solutions, Prime Patient shares her reflections about whether the pandemic has helped or hindered patient engagement and research for rare diseases.

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Prime GlobalRare reflections: has the pandemic helped or hindered patient engagement and research for rare diseases?
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How to make 2022 the best year yet for patient engagement

Olivia Kersey, Patient Engagement Strategist, outlines what we can learn from 2021 to optimise patient engagement strategy and implementation in 2022.

While there would be no such thing as the pharmaceutical industry without patients, it’s only in recent years that collaboration with patients has started to enter the mainstream. While 2021 was a good year for patient engagement, 2022 can be both bigger and better.

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Prime GlobalHow to make 2022 the best year yet for patient engagement
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Patient authorship survey poster presented at ISMPP 2022

The Prime Patient team are proud to have had a poster accepted for presentation at the 2022 European meeting of ISMPP (International Society for Medical Publication Professionals), held virtually on 25-26 January. The poster, one of five accepted across Prime Global, presents the results of an internal survey that aimed to identify barriers and solutions to working with patient authors in medical publications.

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Prime GlobalPatient authorship survey poster presented at ISMPP 2022
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Creating an effective patient engagement set of practices that is enduring and future-proof

What’s next for different disciplines of patient engagement in 2022? Find out more with Emma Sutcliffe, Jon Hoggard, Olivia K, and Ross Jackson. We are committed to providing Voice to Value practices that are egalitarian and enduring.

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Prime GlobalCreating an effective patient engagement set of practices that is enduring and future-proof
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Social media in patient engagement

It is hard to overstate the importance of social media in today’s healthcare ecosystem. Research has shown us that 74% of all internet users engage with social media, with a huge 80% of those people looking for health-related information or engaging with health-related topics.1  Social media has also become a place for people with chronic conditions to connect with each other, with research suggesting 40% of patients rely on social media to assess how others are dealing with and managing their condition.2

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Prime GlobalSocial media in patient engagement
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People living with HIV: 40 years of patient activism

This World AIDS Day, Emma Sutcliffe, SVP Patient Insights and Solutions, takes a look at how far we’ve come and how far we’ve yet to go. Patient activism is a key factor in this progression; Emma discusses her experiences over a near-three-decade career in medical communications and working with patient organisations and how central the patient really is.

 

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Prime GlobalPeople living with HIV: 40 years of patient activism
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How can we make lung cancer trials more patient-centric?

In recognition of Lung Cancer Awareness Month, Olivia Kersey, Patient Engagement Strategist, illustrates current opportunities for the pharmaceutical industry to better meet lung cancer patients’ needs across clinical trials and beyond.

 

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Prime GlobalHow can we make lung cancer trials more patient-centric?
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Your guide to patient authorship

Patient involvement in clinical trial design has evolved to provide opportunity for patients to be involved in medical publications. This evolution has allowed medical publications to gain invaluable patient perspectives on clinical research, by involving patients as authors in the development of plain language summaries and other, more traditional types of research publications1.

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Prime GlobalYour guide to patient authorship
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Key Themes from ISMPP West 2021

We were glad to attend the ISMPP West 2021 Meeting on October 21–22, the first in-person meeting in almost two years! The meeting focused on opportunities for connectivity, transparency, and inclusivity, and Jenny Blackham, VP Client Partnerships, gave us first-hand insight! Read below to learn more about the key themes at the conference.

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Prime GlobalKey Themes from ISMPP West 2021
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Dealing with Problematic Comments on Clinical Study Facebook Ads

Because so many people see Facebook ads, you can expect at least a few negative or other problematic comments. Even though you do not author such comments, viewers will associate them with your study. Ross Jackson, VP Patient Recruitment Services, discusses how to handle such comments.
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Prime GlobalDealing with Problematic Comments on Clinical Study Facebook Ads
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Patient Recruitment For Clinical Trials Using Facebook Advertising

Is Facebook the most effective means of reaching a wide audience when it comes to patient recruitment strategy? Ross Jackson, VP Patient Recruitment Services, shares his thoughts with The Huxley Morton podcast in a new video. He is, literally, the man who wrote the book on patient recruitment for clinical trials using Facebook ads! Listen to the podcast below.

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Prime GlobalPatient Recruitment For Clinical Trials Using Facebook Advertising
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Patient Engagement – An Adjuvant Therapy With Demonstrable ROI

Emma Sutcliffe, SVP,  Patient Insight and Solutions gives an overview of patient engagement, benefits of investing in patient engagement programmes and why elevating patient engagement should be an essential business spend for patient safety, support and societal gain.

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Prime GlobalPatient Engagement – An Adjuvant Therapy With Demonstrable ROI
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The Digital Payer: Fact or Fiction?

Our experts, Sue O’Leary, Senior Vice President Prime Access, Jenny Blackham, Vice President Client Partnerships and Head of Digital Solutions Michelle Collins recently led a webinar with the team at NetworkPharma and MedComms Networking. Discussing ‘the digital payer – fact or fiction?’ the webinar was a brilliant platform to discuss perspectives and share ideas about about evolving payer communications in the changing digital landscape.

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Prime GlobalThe Digital Payer: Fact or Fiction?
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Health literacy in action

The World Health Organisation defines health literacy as ‘the personal characteristics and social resources needed for individuals and communities to access, understand, appraise and use information and services to make decisions about health.’1 Where levels of health literacy are high, people are able to play an active role in improving and maintaining their own health, engage successfully with community action for health, and push governments to meet their responsibilities in addressing health and health equity.2

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Prime GlobalHealth literacy in action
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Patient Engagement Day 2021: the highlights!

On Wednesday 1st September 2021, we launched the first-ever annual Patient Engagement Day – and what a day it was! Olivia Kersey, Patient Strategist, takes a look at some of the highlights.

Starting as a spontaneous brainwave from Emma Sutcliffe, our SVP, Patient Insights and Solutions, Patient Engagement Day 2021 involved a webinar with top industry thought leaders, video collaboration with three of our Patient Partners, a Twitter campaign, case study sharing, and the development of a toolkit to help other organisations to get involved. And that was just for the launch!

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Prime GlobalPatient Engagement Day 2021: the highlights!
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What next for Plain Language Summaries?

Plain language summaries, or PLS, are a concept that has indelibly changed our world of medical publications, likely forever. And yet, we still seem a world away from having PLS integrated fully and consistently into publications practices. In fact, it has taken several years of head-scratching to even align on a definition for PLS for publications, versus patient lay summaries of clinical trials, layperson summaries, and so on.

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Prime GlobalWhat next for Plain Language Summaries?
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The WHO Global Patient Safety Action Plan 2021-2030: Implications for Patient Engagement in Pharma

The WHO Global Patient Safety Action Plan 2021-2030 is a key document that outlines the changes and aspirations that the WHO has for the next decade around protection and wellbeing of patients. The plan, produced on 3 August 2021, aims to educate various stakeholders (NHS, HCPs, pharma and patient groups) about current issues surrounding patient safety and outline their proposed solutions1. The main goal over the next 10 years is a ‘zero harm philosophy’1. This means that although it’s impossible to totally wipe out errors in patient safety, the goal is to work towards being as close to zero harm as possible. But why are we telling you about it now? Because it’s World Patient Safety Day!

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Prime GlobalThe WHO Global Patient Safety Action Plan 2021-2030: Implications for Patient Engagement in Pharma