House086 is the Lymphoma Coalition member organisation in China. As we all know, China was the first country to face COVID-19. Very quickly, House086 had to find ways to support patients with lymphoma during this crisis, even though everyone was faced with the challenges of government mandated social distancing. Here they share the key lessons learned.
What was the most important role House086 provided during the COVID-19 pandemic?
The lack and uncertainty of information is the most important and main reason isolated patients felt fearful. House086 tried to bridge the information gap by providing credible, professional, and updated information to support and ease their worry and tension.
What information did patients and caregivers primarily require?
Patients and caregivers most needed from House086 reliable, timely information on treatment continuity and hospital systems.
Specifically, patients who needed to change their therapeutic regimen felt very nervous. They wanted to contact and consult with doctors on how to continue their treatment.
Popular topics included:
- The current situation of their treating hospital. This included wanting to know when the hospital was going to return to normal. During the COVID-19 outbreak period, some hospitals only provided several hospital beds for patients with severe lymphoma, a significant change to the usual patient experience.
- Some hospitals were closed to certain patients or were not seeing cancer patients due to the virus, so patients wanted to know what they should do, including if they should go to a different hospital.
- With transportation disruptions, they wanted to know how to physically get to their doctor or should they even try.
- They wanted to know if it was ok to postpone their treatment because of Covid-19.
- For those patients/carers who had symptoms of the virus or were placed in isolation due to COVID-19, they wanted answers on what they should do and if it was different than the instructions to the general population.
Caregivers were very active, but their information needs and concerns weren’t different to the patients’ concerns.
What other information was requested from patients and caregivers?
They wanted to know how to avoid infection with the virus and whether they should do regular health checks, tests or blood tests even though they do not have any symptoms of COVID-19 or any known contact with anyone with the disease. While House086 did get these types of questions, most questions were about the topics listed in the answer above.
How did you approach this huge task?
House086 consulted with leading lymphoma hospitals and collected their available information related to lymphoma patients. Information was updated regularly and shared online via newsletters, an existing app, website and WeChat groups (the equivalent in China to Facebook).
Meantime, physicians were invited to participate in webinars. Several physicians participated at the same time and answered questions that patients asked before the webinars. Once doctors confirmed their participation in a webinar, the news was shared with patients and carers who could then submit questions they wanted answered by that doctor. The questions were collected and brought to physicians in advance, so they were prepared to answer them.
After the webinars, common Q & As were defined and a summary document or video was created and distributed via newsletters, the website, app and WeChat groups again. That helped patients who missed the webinars.
About 876 questions were asked in total. More than 85% of questions were able to be answered.
Did you have the systems in place to do this work?
House086 had some systems in place as we already had online groups, an app and a website, but we needed help to do all this work. Some local pharmaceutical companies supported House086 by providing access to platforms to allow them to host meetings virtually and by inviting physicians to participate. Media also got involved and helped by advertising these activities.
How did you assist patients that were unable to receive treatment?
House086 held 24 webinars for patients and doctors from Feb 6 through to Mar 16, which basically meant one webinar every two days. Some webinars were general while others focused on a specific lymphoma subtype. These webinars were super-welcomed by patients, and at the peak participating time included about 1800 patients all joining at the same time. 54 physicians and experts also participated.
Was there ability to set up virtual appointments (online)?
House086 did not set up one-on-one appointments between doctors and patients. All information was provided online, including webinars for groups.
Were the physicians appreciative and fully in support of your communications to patients?
Yes, most of the Chinese lymphoma physicians also suffered from a lack of direct communication with patients. They needed to let them know the updates and news. So the physicians were active in our webinars and they appreciated and fully supported our communications to patients.
Hongfei (the leader of House086) has very good relationships with lymphoma experts in China including Doc. Zhou, who works in Wuhan. This hospital was the hardest hit hospital during the virus outbreak period. The pre-existing good relationship meant when we needed to, we could set-up online meetings with him and even invite many other Chinese lymphoma experts who had experience in dealing with this situation as well.
Did you work with physicians on key messaging?
Yes, House086 worked with them on sharing transparent information.
Did doctors participate in live question and answer sessions with patients and carers?
Yes, they did.
Did you also have patient helplines (phone) for patients to call?
Around 30,000 patients can connect with the House086 team directly via WeChat, so we don't need to have helplines (phone) for patients to call.
How did you disseminate information to patients?
All communication was virtual. Information was communicated in written materials, news articles, videos, and webinars. House086 disseminated information via their website, newsletters, an existing app, and WeChat groups (the equivalent in China to Facebook).
The COVID-19 situation is easing in China. Are patients now back on their treatment or does this continue?
Because most patients are now getting back to their normal treatment routine, we have reduced the frequency of our webinars. But we made a whole year webinar plan, which includes about 200 webinars for patients and physicians, as they are an effective tool.
What is the biggest lesson learnt to pass on to other groups?
Keep information transparent and up to date. As patient groups we have a responsibility to meet patients information needs.
Any final words to other LC members?
We hope this information helps other groups.
A note from Lymphoma Coalition
House086 did an outstanding job responding quickly to the COVID-19 situation. Everyone has lessons they can learn from their approach.
NCCN - suggestions for self-care and stress management during the pandemic (While intended for doctors, the recommendations are good for anyone during this time of physical distancing and emotional upheaval.)