My Health Records

When will patients be trusted with the keys?

There are reasons that the health care system needs health advocates and navigators. The health care system is complex, and many patients feel they are not real partners in their care. One patient lamented to me that they felt like they were being ‘blown off’ by their health care provider.

Patients have numerous frustrations such as not being listened to, contradictory information, sometimes incorrect information. They say that they don’t understand how the system works. Some have told me their care provider made them feel like they were making up or misinterpreting their symptoms.  It is not unusual to hear that a young intern tells a patient who has lived a lifetime with a chronic or rare disease that they have X when they have Y.  Unfortunately, the danger of being assertive and knowledgeable is to been seen as a difficult patient.

The health system has a history of being paternalist and passive-aggressive with patients. In part, this history led to the current push for a more patient-centred approach to delivering care services. We have made progress, but there is still room for improvement in making the patient a true partner in the health care system – especially when providing access to health records.

Nowhere is the need to make patients’ real partners in the health care system more significant than giving them access and control of their health records.

Currently, gaining access is cumbersome and impractical.  Suggesting there is a need to give patients ownership, management, and possession is almost heresy in some settings.

The frustrations of patients feel when trying to access their health records echoes their frustrations in other areas of the health care system. People are told that their records were deleted when they were not, they hear the records don’t exist when records do exist; they hear that access to records is restricted due to concern for patient safety and privacy.

The facts are different. More patients are harmed each year because they do not have access to their health records than because they do have access. According to a JAMA Network Open study, one in five patients reports finding a mistake in their electronic health record (EHR), with 40 percent perceiving the error as serious. More than 30 percent of all harm events involving medication errors are due to errors in health records. In contrast, there are no published studies showing that providing patients access to records causes harm.

A controversy existed when I first started my career in the health sector; at the time, the argument was regarding allowing patients to self-administer morphine in a post-operative context. Many care professionals believed there was a danger of addiction and abuse if patients have control, yet clinical trials demonstrated the opposite. The research results revealed better outcomes, less pain and less use of morphine when patients have control. We need the same shift in perspective for giving patients access and control of their health records.

Why the Co-op provides a social networking site

My Health Information Co-op’s social networking site is an alternative to using Facebook.  The site serves the Co-op’s mission of improving health literacy which Health Canada defines as the degree to which individuals can obtain, process, understand necessary health information and services needed to make appropriate health decisions.

It’s simple – patients shouldn’t use Facebook

But why shouldn’t patients use social-networking spaces like Facebook1 in which they have already converged and apart of an already-active patient support group? Facebook defines their group feature as “a space to communicate about shared interests with certain people.” The Facebook group feature already allows patients and health professionals to interact through posts. Why duplicate the Facebook service?

First, I use Facebook and this article is more about using Facebook strategically than it is about going cold trukey.  Most of us are not going to give up Facebook but we can be more strategic about what information we give Facebook to sell.  We also need to understand that Facebook is an environment that does not provide any immediate monetary benefits to its users, and I feel that it is unfair; especially unfair to patients.  Patients should have the possibility to (cooperatively) receive financial benefits from their participation in any online community as well as an ability to build, control, modify, and maintain the infrastructure that allows their communities to come into being in the first place.  When patient support group activities take place on Facebook, it helps build equity for Facebook with no financial benefit to patients.

Additionally, conversations on Facebook are owned by Facebook.  Patient information posted on Facebook is not portable, and the only way to remove personal formation from Facebook is to delete it – and even then, the data persists on Facebook’s servers for some time.

In contrast, when someone joins the My Health Information Co-op, they help build equity for the Co-op; this equity flows back to patients by eliminating annual membership fees and creating the capital needed to develop and enhance Co-op services. In My Health Information Co-op’s communities, conversations are owned by the patient and patients can delete or download their content – they own it.

Private Facebook groups are not private

Facebook offers the use of private groups, but what does that mean? What’s the difference between a public and private Facebook group? Private groups only let current members view group content and see who else is in the group, and a private hidden group requires an invitation to join. Like public groups, everyone can search for and view the name, description, and member list of a closed group. But Facebook users can’t see the group’s content until they become a member. Joining a Facebook closed group requires approval by an administrator or invitation by a current member and no one can search for private hidden groups or request to join them.

This cloak of privacy all sounds good. However, using a Private group does not mean the information is not accessible to marketers and researchers. For instance, anyone on Facebook can see who the admins and moderators of a private group; and, of course, Facebook has access to all content on its platforms.

Unbeknownst to many, private groups on Facebook can become public. People participating in private groups should also be aware that group settings can change. In 2017 Hulu created a secret group for fans of “The Handmaid’s Tale.” In anticipation of the launch of the second season, the group’s administrators decided to make the group public to reach a wider audience. The decision upset many members who did not intend for their previous posts to be publicly available.

Do you have a feeling you’re being tracked?

Facebook has used data collected from private groups for its own purposes. For example, through Onavo, a VPN service they acquired in 2013, they tracked the use of mobile apps on smartphones. Facebook’s activity occurred without users’ knowledge and used by Facebook to determine which companies to acquire, and which to treat as a threat.

While Ad sales are the primary source of Facebook’s revenue, there is increasing revenues from major app developers based on the financial value of the developers’ relationship with Facebook2. Facebook has admitted to sharing user data with an estimated 5,000 third-party developers. In Facebook’s for-profit world, marketers are always on the prowl for ways they can target members of private groups. Unfortunately, the for-profit world leaves Facebook open to potential vulnerabilities.

The Co-op offers a better way for patients social networks

Importantly, when someone joins the My Health Information Co-op, they help build equity for the Co-op; this equity flows back to patients by eliminating annual membership fees and creating the capital needed to develop and enhance Co-op services.

Proprietary vs. Open-Source

My Health Information Co-op makes democratic decisions and uses an open-source platform, BuddyPress and WordPress for its community learning site. Because the code underlying these tools is freely available, our members can take part in the constructive and collaborative process of building new features for the very platform upon which their community is built. This potential is impossible when using Facebook. In a proprietary setting, like Facebook, modifications to the core platform are acted upon only at the discretion and according to the timetable of the for-profit platform owner.

Data Ownership and Data Portability

In contrast to Facebook, Co-op members assume more meaningful control over their information. Unless approved by Co-op members, the site will be devoid of advertising, thus reducing the extent to which patients are commodified within (and by) the online community. Our goal is not to liberate data from one source only to lock it up in another source – our members own and control their information.

The Co-op’s social network platform – the way forward

Information shared in social network sites has proven useful in health prevention campaigns, educational programs, and chronic disease management – these community learning sites have become practical tools for patients and health care practitioners to share or seek information2.

Factors as to why social learning sites are effective include: extrinsic motivation, social and psychological forces, as well as the social networking and sharing culture of the communities. In a study3, 4 of a Facebook patient support group, researchers concluded that groups supporting self-management have comparable outcomes to in-person programs. While no robust research evidence presently exists to showcase the advantages and disadvantages of using peer support groups on Facebook, what research is available suggests that such groups offer an effective platform of support for the management of chronic diseases. Community learning sites, like patient support groups, reduce the participant burden of engaging in in-person group support programs.

1 On July 8, 2019, Apple co-founder Steve Wozniak warned users to get off of Facebook. Watch “Should I get off Facebook” for an explanation of how Facebook monetizes all user information (even if you participate in a private Facebook group).

2 On December 5, 2018, documents obtained in the probe of Six4Three were released by Parliament. Damian Collins.

3 Della Rosa S, Sen F, Health Topics on Facebook Groups: Content Analysis of Posts in Multiple Sclerosis Communities, Interact J Med Res 2019;8(1):e10146, URL: https://www.i-jmr.org/2019/1/e10146, DOI: 10.2196/10146, PMID: 30741640, PMCID: 6388097

4 Partridge SR, Gallagher P, Freeman B, Gallagher R Facebook Groups for the Management of Chronic Diseases J Med Internet Res 2018;20(1):e21 URL: https://www.jmir.org/2018/1/e21, DOI: 10.2196/jmir.7558, PMID: 29343460, PMCID: 5792702

How I Got Involved: to ease patient frustration

By Founder and Director Doug Balson

The idea to start a co-op formed when I worked for the B.C. Ministry of Health. Then, it solidified when I helped a family member set up the Canadian Pituitary Patient Network and Alberta Pituitary Patient Society. Patients in these groups told stories that made it clear Canadians need help to take control of their health records now.

As the Greek philosopher Plato once wrote, “necessity is the mother of invention”.

Diagnosis: frustration

I used to work as the Manager of Patient-Centred Performance Measurement for the B.C. government. My work centered on using patient feedback to inform service improvement projects. I conducted focus groups, in-depth interviews, and surveys with patients to help communicate their stories to the rest of the health care system.

A common feeling expressed in these stories is frustration. Frustration with physicians and care providers not believing them. With the frustrating challenge of tracking down medical records from their youth, a different province, a retired physician, a specialist, or a walk-in-clinic. And frustration with having to coordinate faxes between physicians or insurance providers.

A long-time kidney patient told the frustrating story of not being believed and ending up at the wrong hospital each time he had an emergency event. Each time, he would tell the emergency services he needed to go to Jubilee where the kidney specialists are. And each time, the ambulance would take him to Victoria General Hospital because protocol called for it. He would go through an hour of intake at VGH only to be told he should be at Jubilee.

Situations like this made me sure there is a better way. Best-practice protocols for some can be deadly for others. An emergency medical summary card, for example, could help communicate which best-practice protocols won’t work for the patient.

I began to imagine a co-op that would provide people with access to their health records. At the same time, it would support their ability to understand and communicate that information to health care professionals. Hopefully, in the process, the co-op would be able to alleviate some of the frustration.

A research-backed hunch

Research from all over the world shows patients need full access to all their health and medical records. When a patient can share their health records with their care team it can lead to earlier diagnosis. Earlier diagnosis can reduce the amount of time they must wait to get treatment and relief from symptoms.

There are also system-wide or Canada-wide benefits. Giving patients this access can improve the continuity of care they receive, reduce medical errors, eliminate duplicate testing, support appropriate treatment plans, and even save lives in emergencies. It can also save us billions in taxpayer spending on health care services.

My Health Information Co-op is an extension of what many patients are already doing – helping each other. People set up patient support groups out of necessity to help them navigate a health care system structured around the needs of health care professionals and bureaucrats. Because we’re a member-owned co-op, we put patients’ needs first.

Stronger together

Together, we can play a role in protecting Canada’s public health care system. We can steer it towards a national electronic personal health record system that actually works for patients. The first step is to join the co-op – we have power in numbers.

How I Got Involved: so I won’t have to start over…again

By Sophie Heizer

When you have an invisible illness and already feel like shit, it’s difficult to convince other people of it. You need access to your health records and knowledge about how to talk about your illness to get the treatment you need. These resources, particularly because I moved countries twice, would have helped me reach a diagnosis earlier.

What’s wrong with me?

Any time someone asks what’s wrong with me, I jokingly ask if they’d like to see the spreadsheet. The truth is, we don’t exactly know what’s wrong with me yet. I don’t have access to the information that would be in that spreadsheet – yet.

What I do know is that I was diagnosed with Anorexia Nervosa in 2013. I have recovered and relapsed and recovered numerous times since then. Two members of my immediate family were diagnosed with anxiety disorders about three years ago. I regularly have anxiety attacks and, less frequently, panic attacks. I started experiencing crippling digestive issues in 2015 when I moved to Australia to study.

I was finally diagnosed with Generalized Anxiety Disorder (GAD) in 2020. My current doctor also suspects I have a stomach ulcer brought on by stress.

Barriers to health

I made reaching this diagnosis more difficult in a number of ways. I moved to Australia in 2015, and then back to Canada in 2019. I can’t always afford to do right by my health. I wasn’t aware that not everyone feels this constant, crushing anxiety. I was apprehensive, to say the least, of therapy and mindfulness. I still don’t know how to communicate all the ways in which I feel like shit. I don’t have all the answers.

In Australia, you can see an over-worked walk-in clinic doctor, or pay out-of-pocket to see a family doctor. In Canada, we wait longer than the international average to see doctors, to see specialists, and for emergency department visits. Therapy is expensive everywhere. Seeing doctors who rush you through a one-minute consult is disheartening.

Each time I moved or switched doctors or therapists, I had to start over. I had to try to explain to more doctors, therapists, and psychologists why I feel unwell and recount the traumatic events that might have caused it. Doing this drains you of a huge amount of energy and it’s viscerally unpleasant.

A personal health record could help in these situations. It means you have supporting information at your fingertips – you could literally just hand over your spreadsheet. Imagine how much time, money, and angst you’d save.

Catch up, Canada

Australia has a national personal health record system called My Health Record. Its rollout has been the subject of intense criticism, particularly for the switch to an opt-out model. I opted out by the deadline because of the various issues and returned to Canada in 2019 with no health records for the four and a half years I lived in Melbourne.

Canada still doesn’t have a national personal health record system. We’re behind many other countries on this front. We take pride in our world-class health care system, but it’s stuck in the 1990s – fax machines are still industry standard.

The co-op model for personal health records appeals to me because it removes some of these barriers. I need this service to not break the bank, be accessible on my phone, and come with me if I decide to move again. I want to control who has access to my information. I want this service to make my life better and easier so I can focus on helping other people.

Join Us!

Join Us in pursuing better health through better access to personal health records. When you join the co-op, we liberate your Canadian health record so you can view, protect, understand, and use them on your terms.

Follow us now to be alerted when we’re open for early registration. Join the conversation on Twitter (@MyHealthInfoCo) or Instagram (@my.health.info.co_op) with the hashtag #myPHRmychoice and make sure you mention us! You can also comment on this post below or send us a message. We’d love to hear from you!