Patient groups typically form around specific disease areas with an aim of advocating for improved treatments and therapies for patients who fall into those categories—and they’re feeling the widespread impacts of that work.
A new report from PatientView published Thursday shows that a majority of patient groups around the world believe themselves to be “significant contributors” to their respective countries’ healthcare systems.
The “Patients in Action” report was based on a survey of more than 1,100 groups representing 83 countries and 65 therapeutic areas, homing in specifically on groups from 19 countries and 20 disease areas. Of those surveyed, more than 70% said they feel they have some sway over the provision of healthcare services, and about two-thirds believe they influence patients’ access to care.
When asked why they believe themselves to be so essential to the healthcare industry, the most popular responses from the patient groups focused on their work to improve care pathways, guidelines and services, guide policy development and advocacy activities and boost patients’ self-care and health literacy.
More than 60% of the respondents said their groups help represent patient interests to drug regulators in their countries, well up from the just over 20% of patient groups who agreed with that statement in a similar PatientView survey in 2018. Related to this, 58% of this year’s respondents said they feel like regulatory bodies view them as an essential part of the healthcare system.
The groups’ responses also suggested growing influence among the media: The 2018 survey found that less than one-third of patient groups felt respected and listened to by the media, compared to 80% in this year’s edition.
Other stakeholders the respondents felt particularly respected by include healthcare professionals, academic and scientific bodies, pharmaceutical companies, government health committees, pharmacists and medical device makers; at least 50% of all respondents agreed that each of those entities sees them as essential to the healthcare industry.
Based on the groups’ responses, PatientView suggested that patient groups are growing increasingly important to the healthcare ecosystem as they provide much-needed support to patients that may not be available anywhere else in the cash-strapped and understaffed industry.
As for what, exactly, that support entails, nearly 80% of those surveyed said they offer patients healthcare advice and help arrange peer support groups, and just under 70% host phone helplines related to their therapeutic areas. Other common services include supporting clinical trials, undertaking their own research, offering financial support to patients in need and helping deliver treatments and care.
Despite their perceived growing influence among many healthcare stakeholders, the patient groups surveyed are still hoping to carve out an even deeper foothold across the industry.
When asked what types of support they need to achieve their overarching goals, more than 20% of the groups’ responses—the most popular on the list—centered around improving access to care, pathways and quality. Many also said they’d appreciate more networking and engagement opportunities with other stakeholders, in addition to boosts in financing and other resources.