Twitter Chats Engage Patients and Other Stakeholders

Patients and other healthcare stakeholders guide the work we do at PCORI, from suggesting and helping prioritize the research questions we consider for funding opportunities, to evaluating the studies we fund, to conducting the research itself. In the past year, we’ve taken that engagement work to another level—we’ve begun harnessing the power of social media by using Twitter chats to hear from patients and other stakeholders.

The results are impressive. During two Twitter chats that we hosted and two more we co-hosted, hundreds of patients, caregivers, advocacy groups, clinicians, specialty societies, research funders, and other stakeholders asked questions and expressed a range of concerns and opinions about important healthcare issues. From these chats, we have learned what’s important to a diverse group of healthcare consumers and providers. We look forward to another Twitter chat on December 15 at 2 p.m. ET.

PCORI's Twitter Chats

Listening to Stakeholders

During all the chats, we've heard loud and clear about the important gaps in research and care. For instance, during a mental health chat in May, some 1,700 tweets poured in under the hashtag #mhtalk. Participants repeatedly expressed concerns about the stigma surrounding mental health and the difficulty accessing mental health care. These are topics that some PCORI-funded projects are already tackling. The chat confirmed for us that a broad audience is interested in better evidence about mental health treatments. It also provided us with insights about how to engage patients and other stakeholders in research.

 
One of the tweets from our September 2015 Twitter chat on cancer.

Then in our September chat, more than 1,600 tweets on the topic of management of cancer symptoms and side effects appeared under the hashtag #ctalk. They indicated that we're on the right track with the projects we’re supporting in this area. We’ve funded more than 50 cancer studies on a wide variety of topics across the cancer care continuum, and the chat told us that we have our finger on issues that the cancer community cares about. We heard about the very real difficulties people have experienced with coordinating the many healthcare providers involved in treating cancer, a problem several PCORI studies—including one on lung cancer care—are looking to solve.

We also heard about concerns of patients transitioning from active treatment by an oncologist to post-treatment survivorship care. One interesting suggestion from the chat was that pharmacists become more involved in that transition and coordination of care. Participants in the chat pointed out that patients experience significant physical and psychosocial symptoms not only during treatment but for years after their treatment is completed. The chat identified the need for better evidence about ways to manage symptom throughout a patient’s cancer experience.   

Join the Conversation

In each chat, we posed 8 to 10 questions and invited influential stakeholder organizations, as well as the public, to join us for an hour. Anyone could do so. After each chat, the conversation—using the hashtag—continued on Twitter for another day or two.

PARTICIPATING ORGANIZATIONS

We have come to realize that Twitter chats are opportunities for PCORI to open up conversations about patient-centered research and care to a far broader audience. They complement our in-depth meetings with stakeholders in giving us a sense of who might be interested in a topic and their concerns.

 
One of the tweets from our May 2015 Twitter chat on mental health care.

Our next chat, about challenges facing clinicians, patients, and caregivers in care and management of Alzheimer’s disease and dementia, will take place December 15 at 2 pm ET. To participate, use the hashtag #ADtalk.

We welcome suggestions for future Twitter chat topics. Please use the comments below to share your ideas or tweet us @PCORI.