Who controls the health data that we personally create?
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PAN is partnering on a project about person generated data (PGD). We create PGD data from patient surveys, from personal health devices like FitBits and from medical devices like heart monitors for example.
We would like to hear from you.
PAN's role is to determine the principles and process for including patients in this work. As patients and caregivers we need to provide our point of view about how we can control PGD data, where it is stored, who has access and why. We would like to hear what principles you think are important in this discussion.
These are some we are considering:
Patients as Expert Partners
Consent - the right of patients to provide consent to collect, link, see and use our data.
Access - the right for patients to have access to their own person generated data
Trust - the right for patients to expect their data is safe and held in Canadian control and under Canadian law and regulation
Value - the use of the data has clear value to the health of patients and the improvement of the health system. Just because you can collect and use it , should you?Are these all important? Is there anything else we should consider?
Stay tuned, as this project proceeds, we will be back to you.
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I am glad to see a discussion about the data that we collect or record ourselves for ourselves, that might help professionals when they make treatment plans or try to diagnose us.
Finally an area where we decide how to share data or whether to share and distribute it. Even with portals I don't usually get to decide what I get or how I get it.
Then the other issue is who to share it with. I have issues with the idea of sharing my health data with Pharma, or retail companies. And if the partner is eg Telus, Do we trust them more than Google and Facebook?
Annette
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We would like to thank all those of you who participated in the survey we sent out Mar 24 on Setting principles for use of the health data you produce.
We received nearly 40 responses by the Mar 30 close date. The responses were rich in comments and will help us immensely as we put together the Principles for working with Patient-Generated Data (PGD) for BeACCoN, the SPOR primary care research network in Ontario.
We are currently reviewing the responses in order to pull them together into a framework of principles. In this day and age where the ethics of Facebook and others are being called into question, it is so important that we, as citizens, have a say about how our data is collected, stored and used -- especially our health data.
We may come back to you with more questions. We will provide you with the document so you can see the results.
Cheers! Alies and the PAN Innovation Team
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Voice to text
Thank you Alies
As one of us who replied to this survey I am a bit saddened that there were only 40 responses to what is a very important policy issue!
However I am pleased to hear that there was significant commentary which will permit us to develop a comprehensive position paper... And I look forward to reviewing the draft.
Toby
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I am very keen to be involved in this. I didn't notice the survey, but will be happy to contribute to this discussion and drafting paper as appropriate. Organizer of this group, could you please keep me informed. thank you.
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Toby, actually the number of respondents is very high for a survey so we are not displeased. We also anticipate we may be doing more surveys and certainly more discussions around digital health data given the projects PAN is involved in.
When I come up for air, I would like to reach out formally and talk with you more about the opportunities. This is such an important topic and we have the opportunity to influence policy, regulation and how projects both research and in the private sector are done and managed.
This is early days and there is much yet to become formulated around this as the governments, researchers and developers figure they way forward. And as the general public becomes more aware of the issues around data. I think since the Facebook stuff is in the news that people are starting to ask more questions about their data but there needs to be more public education. I've been wondering if that is a role we should play? Thoughts? Alies
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Kurtis, I would be happy to keep you in the loop and thanks for your interest. Please take a look at my comments above to Toby.
I am thinking we maybe should do a PAN Parle or conference call at some point to explore the digital health arena, where we think we can best be involved, what the key issues are and how we can weigh in both as individuals and as PAN. It would be great to get your thinking on this here on the discussion board to start and then hopefully in a phone call when I can come up for air.
Alies
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Thanks Alies -- as you may know, I'm a 'newbie' to PAN -- so my (Canadian - eh?) apologies for my initial lament over the 'low response'. I shouldn't have assumed that PAN members numbered in the hundreds.
Yes, I think this topic (digital health and especially our own health data accessibility and protection) needs to be both explored thoroughly and promoted rigorously to the Powers that Be... so I'm up for a Pan Parle (it would be my first one)... or other group discussion/round table.
Cheers -- Toby
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I also did not get to reply to the survey but very interested in the subject. Please include me .
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Hi Alies
I did respond and thought it was a good and thought provoking survey. I think this is a very important area. With the embracing of real world evidence on many fronts there will much more patient data in play. I would love to be involved in any way going forward with this. eager to see results of the survey.
Thanks
Diana
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So great to know you are interested. This topic will not disappear and is not confined to this project. We will reach out for sure it is too important an area. Thanks, Alies
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All: the work we are doing on principles for working on patient generated data (PGD) has attracted the interest of a number of people particularly during the Apr 15 workshop with PGD stakeholders. We presented the draft principles based on earlier stakeholder discussions and more especially on the survey results coming from you.
The Ontario Ministry of Health is looking at re-writing the privacy laws and are most interested in seeing a draft of our report which is due Jun 3. We hope to have a draft available for comment by stakeholders and by the PAN community soon, so stay tuned.
Alies
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Kurtis, Toby, Diane and Sarah, thanks for expressing interest in the world of digital health and the principles that should be governing it. I am sorry for the delay in updating you - among other things, I have updated my patient experience lately and broke my ankle. Kinda knocked me of my plans.
PAN is working closely with the Centre for Digital Health Evaluation (CDHE) on finding and supporting partners for the evaluation projects. We have just completed a project on MyChart, a patient portal; are starting up one on Virtual Care and are now looking for an additional patient partner for an evaluation of a primary care doctor's dashboard. Two other projects might be to do with patient digital identification and a digital imaging project. Usually the work is online so no need for in person meetings.
If you are interested in any of these, please contact me through hello@patientadvisors.ca.
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This topic is becoming more and more important due to COVID. We have all seen that data and analysis are critical to managing the pandemic. COVID has exposed some holes in both data collection and data flow.
As an interesting little example:
My local hospital has a COVID testing site. When the Premier of ON said now anyone can get tested who wants to, it went from 100+- /day to 3 or 4 times that. The Testing Centre managed to do the tests alright. BUT. The tests went to the hospital lab for processing and the big influx overwhelmed the lab. No problem, other labs with excess capacity were found and the tests sent there for processing. THEN. Instead of 1-2 days for results, it went to 3-7! WHY? The results could not be electronically input into the local hospital system directly. They were faxed over and then manually inputted. As a healthcare colleague put it, the chisel and stone method. They have quickly fixed that and the turn around times are back down.
WE NEED TO AX THE FAX!
While the anecdote above is not about control of data, it does point out some key issues:
a) faxing is not secure especially when it has to pass through several hands
b) faxing is SLOOOW and could contribute to less timely information and therefore spread of virus
c) the strong need to share health data appropriately on a timely basis -- without jumping through hurdles.
Alies
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I have many stories re frustration over faxing. and love the AX the FAX line
Point C is really important, hurdleless for health care access and patient access to data.
And back to original topic, should be explicit that data will be publicly administer, i.e non-profit mechanism
I listened to a webinar the other by STAT, US presentation re info re all the personal devices we have that collect data (fit bit, apple, etc). The presenter said that most companies said patient owned the data , but some said they did because they collect it. It was in answer to a question and she didn't elaborate Another conversation.
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Hello, this is a topic near and dear to the heart of work occurring in IMAGINE Citizens Collaborating for Health in Alberta via the Citizens for Digital Health group - C4DH
Re who owns person generated data, people in Alberta are able, in our MyHealth Records portal, to include a FEW of the apps' data (eg FitBit etc). I don't have any connectable devices myself so don't use this function. The ownership issue is QUITE fuzzy. I don't know how to share my screen shots on this groupsite, for your viewing pleasure. advice?
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Troy, I have heard that Alberta is offering the MyHealth record and wish that Ontario would get to this point.
Data ownership is a very fuzzy topic since there is the notion under law that we "own" our own data but that the approved healthcare organizations act as stewards of our data and have strict rules about a) who can be a steward and b) what the steward allows.
I don't mind the idea of stewards who have to deal with the security issues and backups and redundant servers etc. but I do want access to and control over my data. Then there are the tricky issues about when a patient is or becomes mentally incompetent - a child, someone with dementia, someone unconscious. Do they still retain rights to control who sees their data? What if their choices inhibit the care delivered to them? Where does the caregiver come into play? Do they need to become a legal power of attorney?
I think all these questions can be worked out especially with citizens at the table. I think the focus has to be on consent rather than the use of privacy to reduce institutional risk. There is not enough recognition that the lack of sharing of data can also lead to harms and often does.
Let's all continue to look for opportunities for us all to be involved in the decisions around this that will become policy.
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Keep up the good work on ownership of data. My daughter is in IT for a very large American health lab company: Labcorp. For every lab test performed, patients sign a waiver that states (in fine print) that lab Corp owns the data and has the right to anonymously share, sell the data. It is the sake if this info that is the real moneymaker for the company. Patient Privacy is very strictly adhered. Researchers, in particular, pay for this readily available national data.
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Thanks, Kathy. There is much debate here about all of this ownership of data, who has the right to monetize health data and who controls how that goes.
I think if lab tests are done by the public systems in Canada (paid by us as taxpayers), then patients should still "own" that data and have the right to consent to its use even anonymously. If the tests are done by private labs under contract to the public systems, I still think the same should apply.
I am not sure but I think that the law currently applies implied consent to its use by researchers under strict governance protocols but I am not sure. Does anyone know? Alies
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Thanks Alies. And thanks for all your good work with this data ownership issue. These points are very important. We need policies and guidelines for ownership and prote of privacy of patient health record information including lab/test results from government and private companies. I doubt many American patients have given ownership of their data much thought when they sign those private lab test requisition forms that state the company owns the database. Patients do have access to their results through their EMRs. And they get those results in record time. Patients can also requisition (and pay) for tests directly. Unfortunately, though, each state selected their own electronic medical record system and the providers are not compatible with neighbouring states. At least their private lab results are in a national company data base system. I hope Canada sets up one universal EMR system for Canadians.
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