Protecting Recipients' Privacy and Strengthening Transparent Disclosure: A Dilemma with No Easy Choice

A member asks the President:

Some members have cancer and their families don't even dare tell them, especially elderly members. Applying for mutual aid requires the member's own signature and thumbprint, and when the visiting team later comes, can the visiting members keep the secret for the family? The visiting members shouldn't mention that the sick member has cancer, because some members are timid, and knowing they have this disease will affect their treatment and make them very pessimistic. Thank you!

Zhang Mading, Commune President, replies:

We have encountered this situation many times in our actual work, so here we express our understanding and views on the matter:

First, there is a reasonable side to this member's suggestion. In Chinese families, when a family member—especially an elderly person—is diagnosed with a serious illness, people often tell them only at the last moment, when it can no longer be concealed. In my own experience, my mother was not told by me or the rest of the family that she had cancer until her surgery, and she optimistically believed she would be fine after the operation. It was only later, during radiotherapy and chemotherapy, that she gradually came to understand. So, regardless of whether this approach is scientifically sound, I deeply understand the situation the member describes.

However, since the Commune was founded in 2011, we have also faced another challenge from members: "Does the recipient really exist?" This too is entirely reasonable. The money comes from all members, and contributors have the right to know whether the recipient is real. To prove that a recipient is real, we must have third-party companies and visiting teams contact the patient, and to win the trust of more people we also have no choice but to publicly disclose the recipient's information online.

So, inevitably, the recipient will learn the truth about their condition. This is one manifestation of the conflict between protecting recipients and strengthening transparency. There are other manifestations as well: some patients have been harassed by phone calls because their information was made public, and this has actually happened. Some recipients even believe the Commune is colluding with pharmaceutical and medical institutions, which creates a very bad impression of the Commune.

This conflict is quite hard to handle, and in practice we have swung back and forth many times.

In the beginning, we firmly implemented a policy of protecting recipients' privacy. For one thing, my personal experience taught me that patients generally do not want to publicize their illness; for another, I felt that protecting privacy was itself a reflection of the Commune's quality; and finally, I felt it was one of the things that set us apart from the old-style charity that trades on misery and personal privacy. So we required of ourselves and our members: recipient image materials must not be made public, and must be pixelated when disclosure is unavoidable; recipients have the right to refuse media interviews, and so on. When members suggested making things public, I posted on the forum to firmly refuse. Suggestions that we should use recipients' cases to promote the Commune were also firmly rejected—not using recipients to promote the Commune was our principle at the time.

But later, we gradually could not hold out against the growing doubts. When the media could find no recipient willing to come forward, and when members could not see photos or information about recipients, negative talk about us spread. Some even considered this a reason the Anti-Cancer Commune grew slowly in its early years.

As cases increased, the calls in customer service, on the forum, and in various chat groups for us to prove that recipients were real and trustworthy grew louder and louder. In the end we could not withstand the pressure and made a compromise: in the disclosure section we now publish recipients' photos, and in the visiting team's photos recipients are no longer pixelated. But requests to publicize recipients' contact details, home addresses, and the like we still refuse.

I still feel somewhat uneasy about these compromises, just as this member's question makes me uneasy.

Was this our original purpose in founding the Commune?

Does this run counter to our goal of reforming the old ways? If I myself were in this situation, could I face it calmly? I think the root of the problem lies in the Commune's lack of public credibility—in a lack of trust between members and operators.

When trust is absent, members naturally demand that the Commune disclose more to prove itself, even though this is not necessarily what members would want to see when it is their own turn to seek help. So the key to solving this problem still lies in the KangAi Commune strengthening its own public credibility, and in members having enough trust in the Commune. When one day we can win our members' trust without disclosing recipients' photos, it will also mean that everyone has obtained a higher-quality service. I believe that through hard work, that day will come sooner or later.