Healthcare’s Path Forward: Delivering Value-Based Health Systems

Personally, the most interesting talk at the 90th HealthAchieve Conference in Toronto was Professor Michael E. Porter‘s session on delivering value-based health systems.

Porter argues that first and foremost, there needs to be a common understanding of what constitutes as success, and that Value for Patients needs to become the common denominator for all stakeholders across the care continuum. He defines Value for Patients as the following mathematical equation:

Value = Health outcomes that matter for patient/cost of delivering outcomes

The above formula is patient-centric right off the bat. The numerator will necessitate incorporating patient reported outcome measures (PROMs) as part of the value measurement (i.e. outcomes that matter to a patient).

Porter stated that there is a clear and evidence-based path to move forward in healthcare, which will address the challenges such as rising costs, better quality, and better results for patients. Porter lists the following six essential steps to deliver value-based health systems:

  • Integrated Practice Units (IPUs)
  • Measuring value
  • Bundled Payments for care cycles
  • Integrating care delivery systems
  • Expanding geographic reach
  • Need for the right IT platform

In this post, I’ll touch up on IPUs and share with you some resources I found online.

Integrated Practice Units (IPUs)

Porter argues that it is impossible to achieve value with the current way that healthcare structured. The current model is a matrix-model where patients move from one care setting to the next . He argues that this “ping-pong” approach to providing health care doesn’t lend itself to obtaining value, because it is a sequential process rather than a parallel process. In a sequential model, administrative tasks can become hurdles in delivering “value”. He further argues that this disjointed model doesn’t connect the patient with the right person. What does he mean? Let’s say for example that the condition in question is severe migraines. While neurologists are very skilled in dealing with multiple issues, migraines may not be every clinician’s interest. He argues that getting the right conditions matched with the “interested” clinicians can allow for clinicians and other allied health professionals to develop a high value care delivery model.


Image Source: Porter, Michael E., Clemens Guth, and Elisa Dannemiller, The West German Headache Center: Integrated Migraine Care, Harvard Business School Case 9-707-559, September 13, 2007

He argues that the shift needs to move from clinical specialty to condition-based treatment. Also, an IPU would take ownership of the condition across the full cycle of care (inpatient + outpatient). If this is not possible due to limited resources, it can be accomplished by the means of having affiliations with partner-sites that complement provided services, which revolve around the condition and not speciality. Having IPUs in place lends itself to having higher volume of patients, which is a critical component for the possibility of attaining value.

Here are some additional articles for your reading pleasure: The Big Idea: How to Solve the Cost Crisis in Health Care & The Strategy That Will Fix Health Care. I also found a recent copy of a slide deck used by Professor Porter.

Happy reading!

Embryonic Ethics: A War of Perspectives

The New York Times’ article – cited by The Globe –  raises controversial questions around prospective parents selecting which embryos to implant, and avoid passing down a familial genetic mutation. This is accomplished by producing embryos via in vitro fertilization (IVF), and testing them with a method known as preimplantation genetic diagnosis (PGD). Given my interest in rare genetic mutations, I wanted to further investigate the raised issues and provide an unbiased perspective to the questions.

When are prospective parents justified in discarding embryos? Is it acceptable, for example, for diseases like GSS, that develop in adulthood?” 

Determining “appropriateness” using disease onset as justification is discriminatory and unjust, because it develops prejudice towards a specific sub-population based on their genetic determinants of health. Complications that arise from genetic disorders – such as GSS – will unequivocally manifest as a function of mutated genes.

” And should people be able to use it to pick whether they have a boy or girl?” 

In Canada, the answer is no! It is illegal to discard embryos based on gender, and it is clearly stated in Canada’s Assisted Human Reproduction Act:  

  • (e) for the purpose of creating a human being, perform any procedure or provide, prescribe or administer any thing that would ensure or increase the probability that an embryo will be of a particular sex, or that would identify the sex of an in vitro embryo, except to prevent, diagnose or treat a sex-linked disorder or disease;


An obligation to discard “sick” embryos  (i.e. the ethical thing to do)

Even in the context of rare genetic disorders, stating that parents have a “moral duty” and an “obligation” to “spare the next generation” is rather suggestive, and may be interpreted as an endorsement to discard “sick” embryos. Not all couples are aware of carrying a genetic mutation, and affordability is relative. Also, I’m not sure if “the next generation” is in reference to the ‘potential’ child, or society in general. Flicker (2012) argues that if the “best interest of child standard” is the basis to suggest a duty to deselect embryos, then it cannot be applied. As Flicker points out, deselecting “sick” embryos cannot be legally enforced, because the “best interest of child standard” applies to an actual child, and not the potential of an embryo that may develop into one.

Discarding embryos post PGD results (i.e. an unethical thing to do)

Discarding embryos based on information from a PGD may be deemed unethical, because a discarded embryo can ‘potentially’ develop into a child therefore requiring protection. A recent publication argues potentiality’s validity using evidence in cell biology. Steir and Schoene-Seifert’s (2013) argue that ‘potentiality’ is “depontentialized” (i.e. rendered useless), because of our ability to convert cells -including humans’- with no potential of developing into an organism, into cells that develop into organisms- such as converting skin cells to develop mice pups.

Literature Cited:

Flicker, L. S. (2012). Acting in the best interest of a child does not mean choosing the “best” child. The American Journal of Bioethics : AJOB, 12(4), 29–31. doi:10.1080/15265161.2012.659372

Stier, M., & Schoene-Seifert, B. (2013). The argument from potentiality in the embryo protection debate: finally “depotentialized”? The American Journal of Bioethics : AJOB, 13(1), 19–27. doi:10.1080/15265161.2012.743619

Justice Sophie Bourque: She almost had it right!

The killing of Lin Jun – allegedly committed by Luka Magnotta – made international headlines. Today, the headlines aren’t about the act, rather they’re about a decision made by the courts to block access to data from a research study that Magnotta had participated in the past. The police tried to access the recorded interview conducted between a researcher and Magnotta, however, Justice Sophie Bourque barred access to the transcripts for use as evidence in his trial.

To date, there has been no precedence set in the courts that protects participants’ research data in the case of a murder trial.

There are tremendous ethical considerations in this case, and I will highlight some below:

As a participant, you are assured that your data will not be disclosed/used for purposes other than the study – aka researcher -participant privilege. Was it ethical – albeit a moot point – for the student to contact the police?

What’s more interesting is how Justice Bourque dealt with the collected data from the research study.

  • But after looking at the transcript of the audiotape, Justice Bourque said any usefulness would be minimal, and the harm it would cause to academic research far outweighed the benefit

The above statement is a double-edged sword. Although, the Judge’s decision to block access by the police to the data is a monumental decision that protects research participants, it is unethical of her to review the transcripts of the audiotape. There is a clear indication that her decision was influenced by the content of the transcripts… Suppose she deemed it “useful”, the police gain access to the transcripts and use it as evidence in the courts.

The Judge’s ability to review the content can have implications for future research.

Let’s consider a study that is researching behaviours of individuals who are at high risk of contracting HIV. Hypothetically, if a participant is in a similar situation such as Magnotta, based on today’s precedence, a judge may rule that a participant’s research data made available for the trial. How could this affect the decisions of potential research participants who are at high risk of contracting HIV?

One can argue that this will become a concern to potential participants and act as a barrier to quality research. Should a participant partake in a study, their answers may be skewed based on the possibility that their data – if linked back to them – can be used beyond the scope of the study. Another argument can be made that participants who make for ideal study candidates avoid participation due to fear of prosecution, therefore stifling research.

Justice Bourque’s decision to review a participant’s data collected in a research study is unethical and violates researcher-participant privileges. The potential harm to conducting sound, quality academic research outweighs the benefits of using research participants’ data as evidence in a trial.

“Why do Canadians love their Healthcare so much?”

Anonymous is bewildered as to why  Canadians love their healthcare system.
For starters, love is a strong word… Having said that, I for one appreciate that we have a fantastic healthcare system.

Is it the best? No. Can it improve? Absolutely.

Amongst the plethora of answers, I share with you my answer to Anonymous’s inquiry.

Dear Anonymous,

While we have a good healthcare system in Canada, unfortunately it is not the best model out there – and I will point out some of its downfalls. Having said that, here are some major reasons why we – at the very least I – love our healthcare system.


  1. Philosophy: In Canada, we operate under the philosophy that healthcare – and consequently good health – is a basic Human Right and not a privilege. As such, there should be no barriers to acquiring healthcare services segregating between the rich and the disadvantaged, therefore making it a privilege. So right off the bat, it’s a difference in philosophical thinking.
  2. Burden of Cost: While it is true that most care services are provided at no cost to patients, it does not mean that healthcare in Canada is free! The burden of cost has simply shifted from the patient at the point of service to other forms such as: taxation, government subsidies, etc.
  3. Health: The concept of health is viewed differently. Health isn’t just about your physiology and how you feel, health encompasses a plethora of determinants. Everything from genetics to socio-economic factors affect health. With that in mind, our approach to healthcare is more comprehensive – at least it should be in theory.
  4. Healthy Population: A healthy population is a productive population. A productive population leads to a productive nation. A productive nation yields a rich nation. A rich nation yields a happy population. I’d wager a healthy population is a happy population.


  1. Perceptions: The perception that healthcare is “free” is common amongst Canadians. This is largely due to the fact that we don’t part with any money when we acquire healthcare services, and so the typical perception is that it’s “free”. This perception can generate waste in a system.
  2. Model: Currently, Canada runs on an acute-care model. This means that we treat problems and illness instead of preventing them, so emergency care. Although we are well aware of point #3 pointed out in pros – there is also evidence in scientific literature – we are oh so SLOW in turning around our system to become a preventative one. The most healthcare dollars are consumed by “end-of-life” patients and chronic illnesses. Some of these VERY expensive treatments – in theory and in practice – can be prevented with early interventions, depending on the illness situation. Examples can be more funding into social services, mental health detection, etc.
  3. Centricity: This is somewhat related to con #2. Not only is our healthcare model an acute-care model, it is also a provider-centric model. This comes from years and years of practice in this way. Traditionally, MDs are put on a pedestal because they can cure illnesses, yet in the areas of chronic diseases, the patient becomes the manager of their own health. This is prevalent for patients with rare genetic conditions. Essentially, we need to move towards a more patient-centric model, where the patient is viewed and treated as the “consumer/client” just like in any other industry.

There are a lot more arguments for both sides dear Anonymous. For me, the above mentioned pros are why I love our system. And the above mentioned cons are areas that a new generation of patients will challenge, and with time will change – another reason to love the system. 

Hope that answered your question.



I suppose to an outsider, it does seem odd that we are appreciative of our healthcare system. What I find odd is that healthcare is not universal irrespective of citizenship, geography, status, race and any other social construct – aka baggage – that we’ve amassed over the year. We are all human after all, right?

Are #REB members #maximizers or #satisficers? #ethics

At the Canadian Association of Research Ethics Boards (CAREB) conference held in Toronto on December 6th 2013, the keynote speaker, Dr. Ivor Prtichard, gave a talk on how he speculates research ethics board (REB) members make decisions.

He indicated 6 aspects as to why REB members have very different decision making processes, and focused on two points:

  • REB members exhibit psychological behaviour.
  • REB members are influenced by each other in the group’s decision-making processes.

I will discuss the first point.

With respect to his first comment, it can’t be news – humans are notorious when it comes to exhibiting psychological behaviour. He further explores the topic by asking if REB members’ decisions are derived through Rational Choice Theory. Rational Choice Theory is rooted in economics theory and the gist of it is – I am no expert in economics – that any rational individual when presented with options, will pick an option with the highest favourable outcome for themselves. Next, he argued that REB committee members can be categorized as  Maximizers or Satisficers – I’m going to focus on maximizers.

A maximizer is an individual who takes more time to arrive to a decision – by seeking more information – and considers multiple alternatives prior to making a decision. A maximizer in the cereal aisle is the individual who takes the longest time to pick something. To me that seems pretty normal. Anytime I make a decision that affects my finances, I tend to take a long time before I part with my money! I most definitely classify as a maximizer, because I want the “best bang for my buck’.

Dr. Pritchard stipulates that  if a REB community member is a maximizer, they will advocate – on behalf of research participants – to maximize benefits (i.e. reduce harm). You can find his ppt deck on this page. He used the scenarios from slides 15 and 16 as an exercise. Based on the number you had at your seat, you were given either scenario #1 or #2. Based on your scenario, he asked whether you would pick treatment A or B. I got scenario #2 which says:

“Which treatment is more acceptable? 

  • 600 people are exposed to a virus.
  • With treatment A, 400 people will die.
  • With treatment B, there is a 1/3 chance of no one dying, and 2/3 chance of 600 dying.”

We know that a maximizer is an individual who will pick an option that yields the highest benefit/utility. In the case of REBs, it would be the choice of maximizing benefits to study participants and minimizing risks/harm.

If presented with the above example, which treatment would a maximizer choose? I will make the assumption that the study is developed using sound scientific methodology and will be looking at the efficacy of the treatment. The data we get from the study – regardless of treatment option – is very valuable. When it comes to valuing study data for a maximizer, I will make the assumption this is held constant across both treatment options.

I hypothesize that both treatment options are valuable and to validate that, I will look at where benefits can be maximized within each treatment choice.

Treatment A: we know that 400 people will die and 200 will live. The value in this treatment option:

  • 200 individuals will live

Treatment B: we know that there is a 1/3 chance that no one dies, and 2/3 chance of everyone dying. The value in this treatment option may be that:

  • Everyone might survive

Treatment A Argument: I can argue that treatment A guarantees 200 individuals will live. Therefore, I have minimized the harms by guaranteeing that 1/3 of the participants will live, and view treatment A as having the maximum amount of value.

Treatment B Argument: I can argue that if the outcome is favorable, there is a 1/3 chance that 600 individuals will live. Therefore, I am maximizing the benefit to the participant in the case of a favorable outcome, as such treatment B has the maximum amount of value.

With both treatments possessing value, which would a maximizer choose? Would she choose treatment A and guarantee 200 participants live, or would she choose treatment B for the chance of saving everyone?

Rational Choice Theory operates on the assumption that a “rational” individual is going to always make the choice of maximizing their utility – in a REB context it means minimizing the harm to participants.  I would agree that this may be somewhat true when it comes to consumer choice for material goods, but disagree with its applicability in a REB context. Do you think people can be simplified to rational or irrational?

When both treatment options exhibit value, the decision-maker’s choice is skewed by what they perceive to have the highest value – save 200 vs try to save all 600. It seems that the treatment choice is made based on the member’s preferences, and the common denominator in picking treatment A or B is the member’s tolerance for risk.

Is it a “rational” choice not to conduct the study at all? People can’t be simplified down to rational vs irrational, because people have different values. If you are an individual who values gaining information from the study, its applicability in the future and the way it can help advance science and medicine, the differentiating factor becomes your tolerance to risk.

A risk-averse individual is someone who will pick treatment A, because we can guarantee that 200 individuals will live. The risk-seeking individual will pick treatment B – even though it is riskier – because it has the potential of having the best payout .

A recent book I read, does a phenomenal job of looking at how people make decisions as opposed to why they chose an outcome.

The book You Are What You Choose by Scott De Marchi and James T. Hamilton introduces the TRAITS model and identifies 6 categories for an individual’s decision-making process: Time, Information, meToo, Altruism, Stickiness, and Risk.

The authors argue that a person’s decision-making is directly correlated to where they fall within each category, and the combination of their TRAITS is fundamentally the way each person makes decisions, irrespective of context. Based on our TRAITS, we make decisions in all areas of life that are reflective on where we score within each category. They also point out that there is a clear distinction when it comes to “consuming” ideas or material goods. I think Rational Choice Theory fails to hold true in the REB context, because we are not consuming material goods. It would be interesting to test the TRAITS model within a REB setting – there’s a good dissertation topic.

I  believe TRAITS is a better model of explaining how we make choices. It does speak to  people’s individualities and injects “human” back into decision-making. Having said that, my sample size is just me, so take what I say with a grain of salt and decide for yourself.

Dear eHealth Ontario, come again now?

Today, eHealth Ontario issued a RFP  titled “Predictive Economic Modelling for EHEALTH Benefits” – Where do I begin?

They further elaborate by stating: “submit proposals for a health economics benefit evaluation model and methodology to be used to predict the quantitative benefits of an EHEALTH Ontario clinical program.” – Who wrote this?

Let’s start. Which clinical program are they talking about? Is it their Diagnostic Imaging, Drug Profile Viewer, Medication Management System, OLIS or Physician eHealth program? They can’t possibly be asking for a model that will cover ALL of the above programs, are they? Let’s discuss.  

I’m glad eHealth Ontario is looking for “quantitative benefits” – which I think is great – to see if the numbers make sense, or not.

So, what type of “economic model” are they looking for? Is it cost benefit, cost effectiveness or cost utility analyses? 

What criteria are they looking to quantify? Monetary, productivity or quality adjusted life years?

Who’s perspective are they using? Clients, Providers, Government?

I’m guessing by “Predictive Economic Modelling for EHEALTH Benefits”, they really mean a Health Economics Evaluation for each of the eHealth projects they have funded to date. I may be wrong, but I do not believe there is a “one size fits all” type of analysis for all their programs.

How I interpret this RFP:

eHealth Ontario is looking to acquire experts to conduct an evaluation analysis – with solid methodology and good data – for informed-decision making, which I think is an absolute must at this stage of the game – OLIS anyone? As a tax paying citizen, I support this endeavour.

My perception is that they don’t quite know what they are asking for – although the intention is there – however, I think more direction and organizational clarity is needed… perhaps pilot one program area. Dear RFP requester, sit down with experts and figure out what what you want to measure and what to look for.

Here is a great free resource for Health Systems Evidence.


Helping Patients With Chronic Disease: How Not To – Part 2

Following my latest post, I reached out to an expert in privacy as well as a primary care physician for some feedback. Below I share with you a “quick ‘n’ dirty” fix – I don’t think this is a good solution – and address some of the concerns and feedback I’ve received.

Quick ‘n’ Dirty Workaround:

Here it is is: ask your family physician to request all your records from the different providers. They do not get charged for it. Whether your family doctor charges you is another matter. Also, how is this efficient for the patient and the primary care physician?

Feedback & Concerns:

Most of my examples are anecdotal and I have not used real evidence:

I prefaced the post that most of the information came from my master’s project. In this project I had a methodology on how I will search, classify, synthesize and communicate the information. While it may seem like I have not used any evidence in this post, I have reported from evidence-informed knowledge. In hindsight, I should have incorporated more of the evidence in the actual post as opposed to simply reporting it. Having said that, I think the best way to “drive-home” a point is through anecdotal examples.

The law allows you free access to your PHI:

Indeed, the law does and I did not state otherwise. It is at the discretion of the custodians that hold your records whether they charge you or not. In my original post, I point out that as a patient requesting to obtain my information, my perception – not reality – is that I do not own my records, because I am being asked to pay to get them. Although “access” from the law’s perspective isn’t the issue, obtaining the records is and hence this creates a barrier that impedes “access” to information. Although I do not have any evidence to back the following claim, I think this barrier to obtaining your records can create more health problems for the patient (e.g. anxiety, frustration). Not only are you managing your life and career, you also have to manage your health. If you’re missing a key piece, how can you complete the puzzel?

The claim that only those which chronic disease should have free access creates an inequitable argument since there is no evidence of the value for such an inequality:

By law, we have ascertained that everyone has free access to their PHI. The argument then is applicable to custodians of PHI who charge the fee for individuals wishing to obtain their information.

I agree that my argument may seem inequitable to patients who do not have a chronic condition. However, there is no evidence for the value of obtaining PHI for healthy patients, versus the value in empowering patients with chronic conditions to better manage their care is evidenced through studies using various types of interventions.

 The above mentioned claim creates a privacy issue, as the individual with a chronic condition  – any one for that matter – would have to disclose their health information.

I agree with this statement. In my opinion, it goes to reinforce my belief that our system in Ontario does not revolve around the patient. How do you manage this aspect? I do not know. It would be interesting to see how the flow of information will be designed to deal with this particular issue (NB: explore Privacy by Design). My inclination would be to find the root-source of the information. Where and who in the patient’s circle of care captured this information? Can the patient be qualified – by a clinician – at the point of information capture? How do you systematically enable and ensure that the patient does not perceive or face barriers in obtaining their information? How is this access communicated and implemented across the healthcare continuum without compromising the patient’s privacy? Does the patient care to remain anonymous or not?

How do you define “chronic disease”?

A good place to start is Ontario’s chronic disease prevention and management framework (see prior blog entry). It does a great job in defining “chronic disease” and thoroughly identifies factors – health determinants – that attribute to chronic diseases in individuals, in addition to presenting a strategy on moving forward.

Who then is the arbiter of what constitutes sufficient justification for such free access? What is the threshold of severity?

Fantastic questions to which I answer: It depends, as a myriad of questions have to be asked.

Who’s point of view are we taking? What are the desired outcomes? What does evidence – quantitative & qualitative – inform us? What is the condition that is being considered? What political/economical forces are at play?

I can only speak to populations with rare genetic disorders, as that was the primary focus of my research. It is worthy to note that some people have the propensity to develop certain conditions (family history), however I believe those individuals fall under the education and prevention group, as opposed to individuals with a genetic mutation (verified through genetic testing) who will require ongoing management of their health.

What’s the biggest take away? We need to have a discussion – probably many.

Will our discussions accomplish anything? Depends on who’s playing in the sandbox.

One thing is for certain, something has got to give.

Helping Patients With Chronic Disease: How Not To

Let me preface that the information in this post results from my master’s  report. Should you wish to get more information and/or references, please contact me at

Since 2007, Ontario released a revamped framework to manage patients with chronic diseases. The frameworks calls for various aspects of clinical and non-clinical interventions that cover clinicians, allied health professionals, patients and other healthcare providers, to collaboratively help these patients  achieve better health outcomes.

One of the concepts in enabling healthier outcomes is the notion of access to health – the ability for individuals to attain readily available services they require conveniently.

For patients with chronic diseases, a key component for them is to access their personal health information (PHI). This is most true for patients who are afflicted with rare genetic disorders.

Patients with rare genetic disorders – or individuals who care for them – become managers of their conditions. This could be due to the fact that there is not enough resources for information due to the disease’s rarity, or lack of infrastructure to support their needs. These patients resort to other types of knowledge sources such as online communities and share the knowledge they have gained from personal experiences. Literature shows that in some cases, individuals rely on said advice more than other resources.

In Ontario, legislation allows an individual to request their personal health information from the custodians/stewards of the information. Examples could be your family doctor, your records in the hospital, so on and so forth.

Have you tried to request your information? I have.

I requested my information from Hamilton Health Sciences (HHS). I was notified that the first 10 pages will cost $20 and $0.25 for every subsequent page. These charges – of coarse – were to offset any printing costs and such.

That seemed rather odd to me and here is why:

  • Ownership: The information held by these institutions belong to me. They simply act as stewards/custodians of the information on behalf of the patient.
  • Costs: Yes, it is understandable that someone will have to go out of their way (amidst 100’s of daily requests) to locate my chart, copy the information and mail it – I get that – and this costs money.

I asked if the fees can be waived. The answer to that was to speak with a manager. I left the manager a voicemail and got a call from her the following week.

After exchanging pleasantries over the phone, she informed me that the fees cannot be waived. I asked about patients with chronic diseases who require their information. She did not budge.

My next inquiry was with regards to patients who cannot afford to pay the fee. Her reply was to narrow down the time period of the request, therefore reducing the cost, as they do not discriminate against patients who can and cannot afford to pay for these fees. At that stage, I thanked her and ended our call.

What are the messages that this policy sends and what are its implications?

  • Ownership: My perception – not reality – is that I don’t own my information. Having personal health records that tap into hospital systems may potentially solve this issue, but it is not an inclusive solution and will only work if the appropriate policies support it. Having said that, I asked for my information and not copies. Whether they scan or print my information for their own records – technically – shouldn’t matter, however, the patient should not bear the cost of having their own health information with them – with some exceptions that are discussed below. In this case, accessibility is an issue.
  • Costs: Fees associated with obtaining your records create a barrier for individuals who need this information. Only individuals who have enough discretionary income can afford to obtain their records. Based on determinants of health and other studies, the biggest populations with chronic diseases is our growing elderly population and disadvantaged individuals.
  • Technology: I’m a strong advocate for individuals to have personal health records (PHR). However, individuals who do not have access to smart-phones/computers and subsequently their PHR, face yet another barrier. Even in an ideal world where everyone’s records are in a PHR, I.T. is simply an enabler of the solution and should the supporting policy be lacking, then having PHRs is pretty useless – I think.

Does this policy discriminate?


Does every patient require to obtain their information?

Probably not, however, it is their right should they wish to do so.

Should a healthy patient obtain their information at no cost?

I don’t think so. Also, I don’t think healthy patients perceive managing their health as a priority. Sure, they are taking care of themselves and undergoing preventative screening and such, but it would be different in the case of a diabetic v.s. a non-diabetic person.

Should every patient with a chronic disease obtain their information at no cost?

Absolutely. It is an important step in enabling and empowering them to become an active participant in managing their health.

Clearly it is not as simple as black and white. Which types of diseases would classify for free – not costing the patient – access?

Given that we are moving towards a more “patient-centric” model, why are there barriers for patients with chronic diseases?

I hope this post inspires and opens the doors to explore opportunities and engage in dialogue.  As a patient – yes, You – what do You think?

**Update: I’ve received some fantastic feedback from subject matter experts, and will incorporate it into this post hopefully by the weekend. Look forward to it!

HeLa’s Hoopla

A recent breakthrough in science is causing a whole lot of unnecessary hoopla for – non other than – commercial interests.

Here’s a bit of a background. HeLa is a cervical cancer cell line that was derived from Henrietta Lacks in 1951 without her consent. This cell line has been used EXHAUSTIVELY in scientific journals – something like 74,354 according to PubMed. Sequencing the HeLa cell line has given humanity some of our greatest accomplishments – vaccines and a much better understanding of cancer’s mechanism.

A lot of concerns have been raised with regards to consent. No one had asked Mrs. Lacks for consent at the time to collect her cells.

Recently, scientist from the European Molecular Biology Laboratory – EMBL – published a breakthrough article on the HeLa cell line. Here are some highlights:

  • They created a comprehensive map of HeLa, that can help scientist if they choose to use HeLa in further studies.
  • HeLa is mutated BEYOND recognition – no human could ever have a cell structure such as HeLa’s. This is probably one of the most important implications. I will explain below.

Let’s take for instance rare genetic disorders. Multiple Endocrine Neoplasia Type 1 – MEN1 – is a rare genetic disorder that occurs in about 1 in 30,000 individuals. MEN1 is classified as a genetic mutation that affects the individual’s endocrine system by developing tumors – neuroendocrine tumors (NET).

HeLa isn’t used to make inferences on genetic diseases, rather it’s used as a model to understand basic biology. So, how does the study impact scientist that will be using HeLa? For genetic disorders, more and more patient-derived materials should be used, no brainer. If you are using HeLa for genetic purposes (testing what genes do etc.) then the data can inform people how best to do that.

(Note: Scientists are currently experimenting with MEN1 gene therapy, which looks promising, contact me for the publication’s name)

The kerfuffle: Three years ago, Rebecca Skloot wrote a book on Henrietta Lacks, detailing her story, her descendants and such – I’m sure it’s a good read. She wrote an op for the NY Times about how inappropriate it was for the scientist to use and publish the results of their studies without consent from the Lacks – it gets better. A movie is in the works based on Henrietta’s life, yeah. Did I mention that Oprah is involved? Yeah, it just got really interesting, eh?

The issues with Rebecca’s op is that it’s written in such a manner that doesn’t call out EMBL or any of the scientists, which doesn’t give them an opportunity to respond to the matter publicly. Additionally, other media sources are blowing the consent issue out of the water.

Here’s how I see things.

Consent: Does one have to ask for consent from descendants of the original specimen “donor”? I doubt it.

Did all 74,000+ papers that used the HeLa cell line ask for consent from the family? Nope.

So why the big fuss about this study?  I think it’s due to commercial interest. Book + movie = cash cow. Rebecca is protecting her turf, and these scientists are being used as an example.

I got tweeted by an individual named David Kroll about how if I were to read the book I would know that Skloot has the Lacks’ best interest at heart. I’m sure she does, she needs their consent for the movie and for the book! Also, Kroll happens to be a member of the book’s review board. *ahem* commercial *ahem* interest. I was informed by Mr. Kroll himself that he did the review for free, and there is no commercial interest. I stand corrected. However, this doesn’t mean that other interests may be at stake. Not to mention his op on Forbes – I think – is biased, given his close ties with Rebecca.

To be honest, after reading the publication I wanted to read the book, but after ALL this kerfuffle, I refuse to purchase her book because it would contribute to disregarding break through scientific findings for the sake of her commercial interests. 

What’s next? Is she going to ask that ALL the authors of ALL HeLa publications ask for consent from the family?

It’s like that scene in Legally Blonde when Reesse Witherspoon asks the plaintiff if he kept a track record of every ejaculate he’d ever had with respect to his paternal claims.

What about all the breakthroughs we’ve had? By stating that scientific publications – specific to HeLa – require consent for publication is like saying that the family wants to “take back” everything that was accomplished through HeLa – I don’t think that’s the case.

There is no doubt that the Lacks’ should be compensated. Where would one begin? EMBL? Vaccines? Publications? That is one huge can of worms.

Concerns About Insurance Companies:

So there’s talk about how insurance companies will leverage genetic data to potentially refuse coverage to individuals. IF that were to happen – you can’t refuse someone insurance because of their genetic make-up as that constitutes a determinant of health – government policies should be implemented to FORBID insurance companies the privilege of using genetic data for insuring individuals. May I also point out, that this is a “problem” in the US. Also, let me point out that the more we know and understand about genetics, the higher the chances that we won’t need insurance companies, since we will be able to treat individuals based on their genetic makeup. No premiums, no disease – win/win.

Is an apology warranted? Probably. Is a retraction warranted? No.

How much do you want to bet that EMBL were asked to pull the publication?