A fast-paced tweetchat based in Ireland and held recently provided many insights into the current status of patient involvement in the health care system and the role of ‘expert patients.’
The chat was held at #Irishmed, a health-related tweetchat, hosted by Dr. Liam Farrell (@drlfarrell), an irrepressible former Irish GP, and columnist for the British Medical Journal.
Over the course of one hour and more than 1200 tweets, about 100 participants from Ireland and as far afield as the Philippines and Canada debated five questions concerning the role of expert patients and the challenges they face.
Participants included several patient advocates as well as physicians, nurses and other health care providers.
First up was a discussion of what it means to be an expert patient and whether the term is a useful one.
Many pointed out that patients are the experts in their own condition and that this needed to be acknowledged by health care providers and the system.
“It’s about valuing the expertise of the patient with lived experience alongside clinical expertise,” was one comment.
“Some patients can know more than treating practitioner about their condition. Listen to them. Learn from them,” was another. “The better informed they are, better they learn their conditions, the more they can contribute,” another person added.
However Farrell expressed concern about the growth in the number of patient advocates and the system’s need for such individuals. “Bit concerned that Expert Patients will become yet another HC profession, another layer of bureaucracy,” he tweeted.
Asked the role of expert patients, participants identified the value of involving them in everything from health policy planning and decision making to more informal roles. “…we educate strangers on our challenges, talk to the newly diagnosed and coordinate our care,” said one person.
Noirin O’Neill (@Noirin0Neill) a leukemia survivor and Irish patient advocate who participated extensively in the chat through her husband, tweeted that health care providers (HCPs) “complain about lack of resources, time, blah blah – create a new generation of patients to help.”
Others noted that all patients – not just experts – “should be listened to, informed, respected, and involved in their care.”
The chat then went somewhat off-script with a discussion of whether expert patients should be paid for playing formal roles in the health care system. Most argued that because of the time-commitment and importance of their roles, patients should be paid for this work.
“Many have suffered financially through their conditions. We should not make that worse …” was one comment.
Lack of remuneration was identified as one of the main challenges involved in being an expert patient.
Asked to enumerate these challenges one person tweeted: “trying to manage poor health with involvement activities, being taken for granted, only person in room not paid for time.”
“Juggling work, health, finances, bureaucracy, stigma, tokenism … may need more than 140 characters for this on(e)” another person tweeted.
“Being a patient advocate is a full-time job. Lots of invites, lots of phone calls, lots of talk – for no pay. Unfair,” tweeted O’Neill.
Others talked about everyone wanting patient participation at conferences but questioning their expertise or just having them serve as ‘token’ patients.
At the end of the debate, there were optimistic comments expressed such as that “ working with expert patients should lead to new era of optimism, opportunities and solutions to improve health outcomes for all.”
Finally, it was stated that those advocates currently serving as patient experts “need to send the elevator back down to the next gen of experts.”
(Those wishing a more comprehensive overview of the chat can see the excellent Storify prepared by Marie Ennis O’Connor, (@JBCC)