Empowering People to have a say over their Health and Care Needs

Hosted by Tracy Grey, NHS England

Tony McDermottDr Amir HannanMarilyn GollomDr Richard SillsStuart Moors

1. Health Problems• Some people have

health problems that are linked to the cause of their learning disability.

• People should have health checks.

• People should have Health Action Plans.

2. Understanding your health and being able to tell people how you feel

• People with learning disabilities may not understand when something is wrong with their health.

• Sometimes people feel ill or in pain, but they cannot tell other people how they are feeling.

3. Things you can do to keep healthy

• People with learning disabilities do not always know how to be healthy. They may not get support to help them be healthy.

• Being healthy includes things like what you eat, exercise, and not smoking.

4. Using health services – and how good they are

• Health staff do not always change how services are given to people with learning disabilities so they can use them.

• For example, longer appointment times or having information in easy read.

WHAT WE WANT!• Treat me as an individual not a

condition.• Be prepared for my appointment.• Be flexible around length/timing.• Check on my communication needs.• Check on what support I need/want.• Check that I have understood any

decisions made.• We are clear about what happens

next.• Nothing about me without me.

DID YOU KNOW?• People with learning disabilities are 2.5 times more

likely to have health problems than other people. (Source: Report - Equal Treatment: Closing the Gap.

• People with learning disabilities are 58 times more likely to die before the age of 50 than the general population and 4 times more likely to have a preventable cause of death.

• Overall, 22 per cent of the people with learning disabilities were under the age of 50 when they died, compared with just nine per cent of people in the general population.

• Ethnicity is a salient factor with morbidity and mortality being higher amongst those with learning disability from a minority ethnic group (Mir G, et al. Learning difficulties and ethnicity - 2004 ).

DID YOU KNOW?• 29,000 adults with a learning disability live with

parents aged over 70 or over, many of whom are too old or frail to continue in their caring role (Source:Care Quality Commission Report 2012).

• Between 25 and 40% of people with learning disabilities also suffer from mental health problems.

• Findings from the 2013 Confidential Inquiry into premature deaths of people with learning disabilities found that men die 13 years sooner than men without a learning disability, and women with learning disabilities tend to die 20 years sooner than those without.

• Less than 50% of eligible adults with a learning disability received a health check in 2010/11. (Source: People with Learning Disabilities in England 2011).

Big SIX

1. Hello2. Thank you3. Eye contact4. Fierce listening5. “What do you think?”6. “How can I help?”

With thanks to Tom Peters (@tom_peters)

Partnership of Trust

Type of patient How many have signed up %

Diabetes 214/793 26%

Cancer 72/260 27%

Depression / Anxiety 546/1359 40%

Learning disability 5/45 11%

Bengali patients 252/1509 16%

Total patients 2503/11738 20%

Haughton Thornley Medical Centres, 26th February 2014

www.htmc.co.uk

www.htmc.co.uk

Moving from just Records Access & Understanding

to Co-Production of Records

Moving from just Records Access & Understanding

to Co-Production of Records

Instant Medical History

Computer Patient Interviewing

Dr Richard SillsNHS Innovations Expo 2014

What can we achieve in 10 minutes?

• Some patients responses• Evidence• Brief overview• What can be achieved for Learning Disability

Patients

Patient Responses

• “The questionnaire is a ground breaking way to speed up GP to Patient contact times. The information gained from answering a few simple questions means that the GP has lots of extra information before the patient enters the surgery doors.”

• “I found it easy to use and less embarrassing to explain my problem; I know that when I see the doctor he/she will know why I am there.”

Characteristics of an optimal health system: Institute of Medicine

• Safe• Effective, evidence based• Patient centred• Timely, no waiting• Efficient, avoids waste• Affordable, sustainable• Equitable, no variation by gender, ethnic group,

etc• Constantly improves

IOM report: the problem

• Between the health care we have and the care we could have lies not just a gap, but a chasm

• A system full of underuse, inappropriate use, and overuse of care

• Unable to deliver today’s science and technology; will be even worse with innovations in the pipeline

• A fragmented system characterised by unnecessary duplication, long waits, and delays

A fragmented system characterised by unnecessary

duplication, long waits, and delays

• Sums up the problem• Communication important• PPPPP

Problems

• Access to advice• Ongoing support and communication• Monitoring of Plans and Goals• Patients feeling “cared for”• Carers and families feeling “cared for”• Clinicians and Managers feeling “cared for”

Structured secure electronic communication

• Secure • Patient Portal• Structured data gathering / patient computer

dialogue

A machine can come between me and my patient!

• All of this is true• It need not

happen

Unstructured emailI had surgery on June 11th, things went pretty well as far as the surgery went. I did feel pretty awfull for the first 2 weeks and the day I left the hospital my incision broke open---I had to pack it for

3 weeks then it was restitched and healed well.

I have to admit, the first couple of weeks I was really beginning to wonder if I had done the right thing but my mind is slowly changing. It is interesting to feel myself slowly turn my priorities away from eating. It is consistently amazing to realize how much focus there is on food, in society and in my life specifically. Jim and I always have a ton of company, from friends to family and you know, company centers around food!!

It is an amazing feeling to be full so quickly---I am still not used to that feeling. I do have my fears about not getting enough protein in, I seem to be having a problem eating meats but I am not to regular foods yet and I am still trying to tell myself to slow down, that is such a hard habit to break! I can't really eat sweets, so far anything too sweet just makes me sick. The adjustment of not drinking while eating is difficult too, but getting easier. The milk drinking is getting easier too.

I am so grateful for the year prior to the surgery---I know it was a long time and it was making me spitting mad at the time but................the group sessions were such and asset to me ---I learned so much, I developed actual habits and restrictions in that year. I had pretty much given up sweets and over eating and I think that has been a springboard for me with my diet now. I went to group every week with few exceptions. I learned so much about myself, others, and eating disorders. I gained an insight that so diet could have ever brought to light. I learned to quit beating myself up, to recognize weaknesses and avoid them. I learned and practiced the importance of activity. The importance of "self-talk" was emphasized and I used it as a tool every day---especially on the bad days. I learned that it was never too late and that being over weight was not a sentence, that it was overcomable but that the road to overcoming was a difficult one and that I needed help in changing from the well trodden path to a new one. I am now acutely aware of emotional eating, but I have no choice in the matter, I simply can not indulge---it is so wonderful. I ended up losing 50 pounds in year that I went to group and I am very glad for that little boost. I had a fantastic group leader, I really lucked out! Not for sure how much more I have lost but I know the total is well over 100 pounds. and yes..............I feel so much better. I can walk up the back of St. Marys Hill without even getting out of breath. I am still riding bike and of course riding horse. In fact, Jim and I are going to Wyoming in September for our 20th anniversary---we are taking our horses out to the Big Horns riding for a week---I am so excited--this has been a lifelong dream for me and now my horse has 100+ less pounds to lug. Let me tell you, riding is so much more of a joy for me, it is like starting all over.

Karie is doing well, still in PA with Jason, they were home for 2 weeks this month and we really like him, he is very sweet and seems totally devoted to Karie---while I don't care for his tatoos,(its a mom thing)he really is great. He had a great time in Minnesota---so maybe the might move back here.

Justin graduated and Jim and I are really empty nesting it---Justin is working in the cities and staying with my niece--he plans to attend RCTC winter quarter.

I am still going to school, I completed my Associates Degree last spring and I only have 22 credits left for my Bachelors.

I do so hope all is well with you, I think of you and your family often.

I want to thank you again Michelle for all of your years of care and concern, but most of all for directing me to this surgery and the journey that brought me to it.

please......................if you have any patients or aquaintences that would like to "chat" with me about my experience, feel free to use my name and give them my number or e-mail address, I am more than happy to share.

Omissions

• What do you want from me?• What medications are you taking?• Are you allergic to anything?• What chemist?

• Organized Approach • Data is structured

History taking: How do we perform?• Physicians miss 54% of patients problems and 45% of

their concerns• In 50% of visits patients and doctors do not agree on

the presenting problem• 50% of psychological problems are missed• Only 23 seconds before patient is interrupted (12 secs

for medical residents)• Biggest complaint in patient “satisfaction” is poor

physician communication skills.

(See Bachman Literature review for references)

What about the Computer Patient dialogue?

In ????, the Mayo Clinic Proceedings published the pioneering article “Toward Automating the Medical History” by Mayne, Weksel, and Sholz

One conclusion from it:“.......to relieve the physician from routine, although important, time consuming activities, thereby extending his capabilities to provide ‑medical care. If the time physicians spend in collecting, organizing, recording, and retrieving data could be reduced, at least in part, by information technology, more time would be available for actual delivery of medical care and at the same time the physician’s capabilities for collecting information from patients would be extended. Mayne Mayo Clinic ????”

1958, 1968, 1978, 1988, 1998, 2008 ???????

Evidence is convincing.Highlights

• Warner Slack paper 1960’s• Ray Jones paper 1990’s• Pringle, BMJ 1988• Prof Bachman literature review 2003• Slack WV. Cybermedicine for the patient. • Prof Bachman “evisits” 2010

Landmark Paper

Slack WV, Hicks GP, Reed CE, Van Cura LJ. A computer-based medical history system. N. Engl. J. Med. 1966; 274:194-198

From 1966

• A branching series of questions is developed to assist the medical history taking of the clinician. Standard, carefully worded questions are used to collect a history, with systems having hundreds if not thousands of questions, but patients only answering those relevant.

Professor Ray Jones Paper

• Jones RB, Knill-Jones RP. Electronic Patient Record Project: Direct Patient Input to the Record. Report for the Strategy Division of the Information Management Group of the NHS Management Executive: University of Glasgow, 1994. (Updated 1997).

Professor Ray Jones

• From the number of published research studies in which computers have been successfully used to interview patients, I think there is no need to spend time discussing the following:– A well designed computer system can be used to

interview patients about their medical history, signs and symptoms.

– Such systems are acceptable to the majority of patients

Dr. M Pringle, BMJ

• Using computers to take patient histories, M Pringle, Nottingham University Medical School, BMJ volume 297, Sept 1988

Dr. M. Pringle

• Computers may be used acceptably to gather accurate information and to improve medical decisions without diminishing the role of the doctor.

Professor Bachman 2003

• Bachman JW. The patient-computer interview: A neglected tool that can aid the clinician. Mayo Clinic Proceedings 2003;78(1):67-78.

• Computer Patient Interviewing is valid

• Instant Medical History is the World leader

Mayo Clinic 2010

• Pilot Study of Providing Online Care in a Primary Care Setting Steven C. Adamson, MD, and John W. Bachman, MD

• Mayo Clinic Proceedings August 2010 vol. 85 no. 8704-710

Mayo evisits 2010

• The e-visits made surgery visits unnecessary in 1012 cases (40%)

• In the basic e-visit process, patients entered their reported problem in free text (eg, “back pain”) and then answered questions one at a time. The questions branched such that the history was organised into a readable clinical format.

Some common conclusions

• A well designed computer system can be used to interview patients about their medical history, signs and symptoms.

• Such systems are acceptable to the majority of patients

• Systems give patients more time to think about questions

01:12 AM

Strengths of Computerised interview• Structured, all questions are answered in patient’s time• Can be done anywhere, at patient’s pace & with family

help• Does not Interrupt• Good at obtaining sensitive information• Patients better prepared for a subsequent face to face

consultation• Legible summaries and direct input to Electronic Record• Scales calculated well• Different languages

What does an on line discussion look like?

• Needs a patient portal• Needs secure communication• Needs a workflow with checks and balances

Bring up the iconSign in

Enter a complaint

Answer Questions

Access to over 50,000 unique questions utilising branched logic

Patient can complete as little or as much as they feel able and depth of questioning can be tailored to suit clinical setting

Computers show no embarrassment in asking important questions where responses deem that question is worth answering

ADVANTAGES

Collects more data then a clinician and organizes it into a readable form

Patient is better organisedPatients can do this

Patient collects information that the clinician misses

• 40% of time provided useful information not typically elicited

• Essential Questions missed

• Pilot’s Checklist

Socially Sensitive

News items

• Prof. Field of RCGP quoted in Newspaper and R4• Antenatal care and domestic violence• Sexual Health• Choose and Book• Breast cancer screening• Pilots and alcohol• "Personal Health Plans"• General Cancer Screening recent MPs committee

suggesting that GPs need further training.• Allergies• Adolescent mental health• Pharmacy role increasing, consults & repeats

Learning Disability andProtected Groups

• PPPPP• Collection of important information about

preferences etc. as well as acute and chronic illnesses

• Better care for Carers and Families

Most failures in the health care system are not that the doctor didn't know what to do, the doctor didn't have the data.

Ralph Korpman, M.D.

24/3/94

That the xxxxxxx will ever come into general use, notwithstanding its value, is extremely doubtful because its beneficial application requires much time and gives a good bit of

trouble, both to the patient and the practitioner because it's hue and character

are foreign and opposed to all our habits and associations"-

The Times 1834

That the stethoscope will ever come into general use, notwithstanding its value, is extremely doubtful because its beneficial

application requires much time and gives a good bit of trouble, both to the patient and

the practitioner because it's hue and character are foreign and opposed to all our

habits and associations"-

The Times 1834

Sir. William Osler 1849-1919

“Talk to the patient long enough and he will tell you what is wrong with him.”

Thank you for listening

Rosills@medicalhistory.comwww.medicalhistory.com

Stewart Moors

Taking healthcare to the community