The Share Patient Data Election is an important and defining component of the TCMCR project.
This data will enable us to find out what is really working in real world clinical settings just like yours.
As a side note, I have personally found that approximately 90% of my patients agree to share their treatment data.
A patient has two options; either to share or not share their de-identified data. Each choice will generate an email that is sent to the patient, either outlining the conditions that their data is shared under, or acknowledging that they have decided not to share their data.
Each of these two choices lead to an email being sent to the patient informing them of their choice regarding sharing their de-identified data, once their Create Patient Form has been completed.
Below are the two emails that are sent, depending on the option the patient chooses.
Opt In Email
This is the email sent to the patient, if they agree to share their de-identified data:
Dear [first_name] [last_name]
Thank you for joining the TCMCR family. By opting in to share your data, you are supporting an exciting project.
Two important uses are envisaged:
First and foremost; improving treatment outcomes in patients just like you. We aim to be able to eventually determine which treatments are most effective, through analysis of large amounts of de-identified treatment and treatment outcome records, obtained from many participating practitioners and their patients who we hope will opt in to the project. It is anticipated that a process of ‘continuous improvement’ will occur over time in all practices who use the TCMR, through the identification of which treatments are most effective (or not).
Secondly, supporting academic research. We will also be selectively sharing patient and practitioner permitted de-identified data from our database with prominent researchers and educational institutions around the world, to support research that helps our profession.
If you do not opt to share your de-identified data, your practitioner will still be able to search the Database for recommendations for your treatment. However, this project will only work if we want to help each other. We hope you would like others to benefit from your generosity, just like you will be benefiting from the kindness of others.
Our plain English agreement is set out below;
Your Undertaking to Us.
I [first_name] [last_name], provide my consent for my De-identified Personal Treatment data, to be included in a Research Database and used by TCMCR, only for the following purposes.
Database search purposes for participating practitioners
You the Patient has the right to withdraw their De-Identified Data from the research database at any time by notifying the Registry by email [email protected] using the following form (link).
You will sometimes be followed up on by your treating practitioner after you have ceased treatment to determine the outcome of the final session.
In the future, we are also considering implementing occasional direct contact via text and provide a brief form to confirm your treatment outcomes. You are not obligated to reply to these texts but they will be helpful in corroborating the results your practitioner has recorded.
Our Undertaking to You.
We, the administrators of the TCMR, undertake the following;
We will conform with all lawful requirements for keeping electronic health records, as set out in Federal Law in the My Health Records Act 2012 (Australia) and other jurisdictions when required, including data security and duration of record retention.
At no time will any patient’s data (de-identified or otherwise) be used for marketing or any other commercial purposes.
We are excited to be providing this support to our profession and look forward to serving you.
Dr Michael Popplewell (Founder of the TCMCR project)
Opt Out Email
This is the email sent if the patient either chooses to not share their de-identified data at the outset or opts to withdraw their consent to share their de-identified data later.
Revoked Permission to My Share De-Identified Data
I [first_name] [last_name], REVOKE my consent for my De-identified Personal Treatment data, to be included in a Research Database and used by TCMCR for the following purposes.
- Research purposes
- Database search purposes for participating practitioners
If you do not opt to share your de-identified data, your practitioner will still be able to search the Database to obtain TCMCR recommendations for your treatment. However, this project will only work if we want to help each other.
We hope you would like others to benefit from your generosity, just like you will be benefiting from the kindness of others, but we respect your decision to keep your data private.
Dr Michael Popplewell (Founder of the TCMCR project)
Change of Mind regarding De-Identified Data by Patient
A patient can change their mind regarding whether they wish to share their data at any time. All they have to do is notify you as their treating practitioner and you can go into the patient’s record and update their preference.
When there is a change to this field a new email will be sent to the patient’s email address confirming the program has recorded their new decision.
Effect of Sharing De-Identified Data on Searching for Effective Treatments
At this stage we are planning to allow searches of de-identified data for treatment recommendations for each patient, no matter whether that patient chooses to share their de-identified data or not.
This may be reviewed later.