Patient Led Oncology Research
These are some initial thoughts on the endeavour described on the Facebook group Patient Led Oncology Research . What’s described here are broad stroke proposals and initial impressions.
When faced with a cancer diagnosis particularly where the prognosis is “incurable”, patients are left to fend for themselves and many of us start to research what options are available for us. While clinical trials are the advisable route, this option is not available for the majority of patients, partly due to them not meeting the strict requirements of the study. We will be focused on areas that are not currently well covered in current clinical trial process due to the lack of ability to patent the treatment and thus fund the trails. This will include off label drugs, natural supplements, advanced immunotherapies not currently covered in standard of care (nk cell infusions, dendritic cell therapies, mixed bacterial vaccines (e.g. coleys) etc. lifestyle choices such as diet, exercise and stress reduction techniques etc.
While the internet is full of stories of alternative cancer centers and protocols that work, there is limited statistical information on the outcomes of these treatments (or alternative cancer centers) to assess how effective they are for the money. In some cases the financial burden can be huge and desperate patients and their families are forced into an incredibly difficult situation, adding a large amount of unnecessary stress to an already stressful situation. Our objective is to help build transparency around these treatments and treatment centers to help patients guide their treatment decisions.
The long-term aim will be to collect as much information about the patient, their cancer, the treatments followed and their outcome, and for us to look for patterns that may help with the outcome of a particular case. This information would be fed back to our community to act on.
We are not aiming to provide medical advice, we are treatment agnostic, we are just a data aggregator to help current and future cancer patients better guide their treatment protocols. We recommend all patients use qualified medical practitioners to guide and oversee their treatment protocols.
The simple goal statement:
Every patient counts, every bit of data helps. We are a community of cancer patients (with supporting carers) who have made the choice to take our health into our own hands and are looking at treatment options beyond standard of care. Our objective is to share our treatment options and outcomes to help us establish what treatment options are working and what treatments are not.
While not the primary objective of the initiative, we believe this movement opens the door for a number of potential secondary outcomes.
A Platform to provide Purpose and Meaning
Many who are affected by cancer, faced with an existential crisis, may be on the lookout for opportunities to provide greater purpose or meaning in their life. This group can provide an option for people to contribute to the greater good by supporting the movement with their energy and skills or by providing valuable data that will help future patients guide their treatment plans in a clearer way. By helping it also provides an opportunity to connect and work with others going through the same challenges.
If our movement grows we believe we can use the number of people to help negotiate as a collective. This could come in multiple forms, such as reduced rates for treatment options, blood tests or supplements etc.
Clarification through definition:
“tools and content”
What might be built is undecided and may change over time, but will certainly involve software and articles.
For everyone, all people, from all nations.
“record and share their experiences”
A reliable true record of treatment is kept. The record is shared at the discretion of the user, broadly or narrowly.
This is suitably vague. It has to work for:
There could be other situations.
Clarification through values:
This endeavour exists to benefit patients and their caregivers. While other parties may find value in the information and it’s aggregations, that interest is coincidental and not a driving force.
Cheap or free
Participation for users is cheap or free.
Our objective is to run as a “Not for profit”, we will seek funding initially from the patient community, crowd sourcing of funds and skills, once established we will seek funding from charities and potential partnerships. We may in the future need to charge a small fee for the app to help fund and maintain it. All endeavours will be made to make it affordable to everyone.
While compromise must be made to operate within different legal domains, that compromise is kept to a minimum. The idea will be the patient community to direct and lead the initiative.
‘Patient Confidentiality’ is an interesting idea. Superficially ‘Patient Confidentiality’ is about helping patients keep their medical information safe. In practice, this can make it difficult for people to get hold of what’s theirs and allowing people to share it freely with others for the greater good.
That said, we will need to have firm policies on how we manage the data and to ensure we are compliant with data regulation. For the long term solution, we will need to make decisions about how we validate the data, how we store it, how we ensure it’s protected. We will also help define standards for how the data in analyzed. Unfortunately there are no easy answers for these questions, particularly as we are currently unfunded and thus the solution will need to be cost effective to work and this may lead to the need to implement compromises. There are some difficult questions here, for example do we allow all people in our community to get access to the data to help do their own analysis, do we restrict the analysis to dedicated team, also what’s our policy on supplying data to charities and medical research institution.
In the pilot phase however we are likely to need a quick and dirty solution. For example, many people are freely publishing their treatment plans and progress on facebook, could we continue to do something similar in the early stages as we learn and help build the longer term solution.
Before any research has started and before any data is collected the patient will be informed about how their data will be managed. The data can be removed at the wish of the patient at any point.
At this stage it is difficult to predict where this will be many months from now, this will evolve, however for now the proposal is.
An app/website that allows the patient to fully manage their disease through it, containing all treatments followed, all medications and supplements, all appointments, all blood work, cancer genetics, scan results. Data is analysed across a huge range of patients and patterns are found to suggest potent combinations to treat and ideally find remission.
As a collected we are working together to help improve the treatment for cancer, we could use this power in a number of ways such as helping to influence regulation (for example is it fair many evidence based treatments are effectively banned in a number of jurisdictions), helping to initiate formal clinical trials (in some jurisdictions patients help fund the set up of a trail)
As a collective, could we help address some of the pain points we have today with some of these treatment options, such as the large number of pills to swallow? Could we work with compounding pharmacies to combine supplements into one pill.
The medical community and factions of the patient community are realising that cancers complexity requires a multi pronged approach and addressing the disease with a combination of factors (metabolic, interrupting cell signaling, immunology, cytotoxicity etc) is likely the solution. As the number of treatment options increases and the number of possible combinations is likely to become difficult to manage in a clinical trials setting. Our objective is to help find that combination for the right patient and right cancer. We will not aim to replace formal clinical trials but we hope to provide evidence to suggest certain trails should be undertaken in the future.